Re: Remicade update

2008-07-31 21:54:32

Janine,
I had my first treatment on Monday. I was drained on Tuesday, but
Wednesday I felt like a new person. My treatments are costing $3020
a treatment. I am on the witing list for Embrel, but it probably
will not be avaliable to me until the first quarter of the new year.
I think it costs about $1000 a month for it. I was wondering if you
or anyone you know has stomach pain, nausea and vomiting
following an infusion. I started that today. Great Thanksgiving. I
know it is listed as a side effect, but I was wondering if any one
knew how common it is or if it goes away after time.
Christina
Norht Carolina

MTX and Abnormal Liver Enzyme Tests

2008-07-31 18:19:19

I just got my most recent lab results back and my "AST" was high. I
don't know how long it's been going on because I only see the most
recent report before I visit my rheumy.
I was wondering about others who also had a high AST and whether or not
it meant a liver biopsy was next or if it was considered to be something
else - (diabetics and overweight people can show high ASTs because of
fatty liver - I'm a diabetic and slightly overweight).
I'm trying to muddle through all the informtion I'm getting in doing
this research, but so much of it doesn't apply to me. I would like to
know, specifically, the experience of other MTX users. I would really
appreciate as much feedback as possible.
Please and thanks!
Heather

Re: [PsoriaticArthritis] Remicade update

2008-07-31 07:35:52

hello janine,
i'm arie. i have had about 8 teatments of remicade.
all of them reacted on my body exavtly as you
describe. however, the problem is completely
different. how long does it last. for me no more then
two weeks. actually after a few days i am on pain
again and after about10-14 days there is no mor
effect.
i understand the money-problem. it is also critical
but rememeber the frustration of the pain before you
give up your enbrel. by the way, could you tell me how
much does enbrel cost? in israel we do not get it at
all because of the waiting list
good luck with whatever you decide.
arie kraus

Re: going on Metho- have questions

2008-07-31 07:04:19

It generally takes four to six weeks to see any results at all from
methotrexate- especially if this is your first go 'round with it. As for
side effects, I would be prepared for nausea. By prepared I mean that I
would ask the doctor for a prescription ahead of time and get it filled ahead
of time. Zofran or Kytril work very well with chemotherapy drugs like Metho.
Fatigue is another major side effect. Timing your shot or when you take the
pills orally can help with this. Some take their dose of metho with their
dinner (having taken Zofran or Kytril before dinner, of course!)
Hope this info helps you out. Happy Thanksgiving,
Michelle
group founder

Re: prednisone experience

2008-07-31 01:00:08

Hi Bill,
Thanks for that input.
I've been reading about all the nasty eventual side effects of
prednisone and agree that I don't want to stay on it for too long.
However it looks like I'll have to wait until mid-January until I can
get an appointment with the new rheumatologist and I won't be able to
try any other DMARDs until then at the earliest. In the meanwhile,
I'm trying to keep the prednisone use to a minimum. The GP put me on
a two week, tapering downward schedule and I'm on day 7 now with no
side effects so far (I started at 20 mg for 5 days, now I'm on 15 mg
for the next 3 days, then 10 mg for 3 days, then 5 mgs for 3 days and
then I stop). It really has knocked out almost all of my sore joints
and pain. After that, I'll try to keep the flare from coming back
with NSAIDs and intermittent prednisone use at the outset of a
flare. I've been told that if I take a very small dose just when I
feel a flare starting (e.g. 5-10 mg for 2 or 3 days), I might be able
to prevent a flare from escallating. Has anyone had that experience?
Sharon

Osteoarthritis and Psoriatic Arthritis

2008-07-30 13:20:11

I have gone to a new rheumatologist and found out that the pain in my
back is not psoriatic arthritis but degenerative arthritis. The
normal treatment for that is NSAIDS. Well, I have been on 5
different NSAIDS and am currently on Voltaren, 75 mg 2x daily. That
doesn't help the back pain. I already do back exercises and have had
PT. I have already tried TENS but my PA makes it difficult for me to
attach the device to my back. The only other option seems to be
surgery.
Has anyone here had this experience of having both kinds? How does
the treatment overlap or does treatment of one interfere with the
other?
Should I go to a different DB?
Suzy

Re: [PsoriaticArthritis] prednisone experience

2008-07-30 06:51:09

Hi Sharon,
Prolonged use of prednisone can lead to diabetes, osteoporosis, and increased
appetite. Other alternatives include Arava, Remicade, and Enbrel. Good luck
with your PA treatments.
Sincerely,
Bill in DC

Surgery ahead

2008-07-30 04:20:16

Hello All!
I haven't posted in some time. I inadvertantly became a lurker when
I let my e-mail pile up & it took weeks to catch up again.
I've been to my rheumy a couple of weeks ago. He took me off of
Arava as I am no longer receiving any benefit from it. This is the
third DMARD I've failed on. He would like to have me start on
Remicade, but not until after my up coming surgery. If I am in a
crisis, he'll put me back on Arava temporarily.
I saw my surgeon last Wednesday. I will be going in for a
contracture release on February 28. I wish it could be sooner, but
his schedule is booked. I've never been nervous about surgery before,
but last March I had problems with a synovectomy of the same elbow.
The anesthesiologist had a problem with a nerve block under my arm
which resulted in a neuritis. I was in severe pain for months.
The doctor said he can't do this surgery without a nerve block, but
will do everything he can to make sure this doesn't happen again.
I guess I am just now realizing the potential for things going wrong
with the large concentration of nerves in the arm. Worse still, my
employer sponsored disability status terminates te week following my
surgery. I'm really hoping things go well so I can get on Remicade
asap and search for a new job.
Has anyone of you had a contracture release done on an elbow? I'm
hoping for a little insight from someone who's experienced it.
PS- Merribeth, I was happy to hear your happy news. I wish such
blessings could touch many more in the group.
Tammy in Phila

Re: [PsoriaticArthritis] A VERY GOOD DAY - Lisa

2008-07-29 20:33:25

Lisa, we have very similar experiences here. If you'd like to chat - please
feel free to email me at leckie@...
Karen in NJ

prednisone experience

2008-07-29 17:28:43

Hi,
Just a comment about my latest experience trying to find relief from
PA. As I've mentioned in previous posts, I've had PA for about 4
years. It started fairly slowly, with a swollen, sore wrist & some
trigger finger fingers, My hand surgeon was able to nip most of the
flares in the bud using cortisone shots (he did this before we knew
it was PA). Then some sore toes & hips & morning stiffness. But
recently, it's been so much worse. For the last 8 months, ever since
I strained my shoulder (I think I over did it gardening), I've been
in a downward spiral, with all kinds of painful, immobilizing flares
in various joints and severe morning & evening stiffness.
Sulfasalazine failed due to side effects and Right now I'm trying
minocycline, which I understand is now considered a DMARD --
sometimes very effective for mild to moderate or early PA. I also
understand that it can take a relatively long time, between 3-10
months, to begin taking effect. So I've opted for short-term, low
dose prednisone as a temporary solution, until it kicks in or until I
can find a more suitable DMARD. Anyway, its been 5 days since I
started taking the prednisone, and I am in TOTAL shock at the
results. I haven't felt this good in years! 98% pain free (just an
occassional twinge in the shoulder). I had completely forgotten what
it feels like to be a normal, pain-free person. I realize that my
world has been getting smaller and smaller, in terms of what I can &
can't do and in terms of my outlook for the future. Anyway, for the
last 3 days I've been on cloud nine because of the prednisone,
enjoying all sorts of activities. I know the prednisone is only a
short-term solution. But it's made me more determined than ever to
find a DMARD that works. I don't want to learn to live with the
pain, I want to fight to get rid of it permanently...
Sharon

RE: Just a short poll.

2008-07-29 14:40:30

There have been several people come in, in the past few months. Is
there anyone here that is in the Metro Atlanta, GA area?
Thanks,
Scott in Atlanta, GA

RE: [PsoriaticArthritis] A VERY GOOD DAY

2008-07-29 05:00:27

Hi My name is Lisa and three weeks ago my husband Bob was diagnosed with PA.
He's had the derma. P since sixteen and he is now 34. He's had pain off and
on for almost all of his adult life but always thought it was due to
football injuries.
I just wanted to say thank you for sharing your good news this morning. I
really needed it. We have four children (3 boys under the age of 6) and a
teenage daughter and we all have been seriously affected by PA. Of course
Bob suffers the worst but the boys are having a hard time with understanding
why they can't hold Daddy's hand anymore and why they can't "rough house"
with Daddy like they used to. Sometimes it's heartbreaking to see the
little things go away that we took for granted before like wrestling with
your kids or holding their hand in church. Our daughter just has had a hard
time in general understanding why the MTX and Indomethacin isn't making him
better right now. We pray and have faith that God has a master plan in all
this and I firmly believe that the relief from pain is in sight but the in
between times here have been hard and sometimes just reading the goodness
that happens for other folks has just lifted my spirits which in turn helps
me to keep my wonderful husband smiling through all of this.
Thanks for letting me read all about the lives of those who have been
affected by this terrible disease. I'm glad to know that we aren't alone in
this.
May the Lord Bless You!
Lisa

Re: Question about Methotrexate

2008-07-29 01:38:21

Hi Beth Ann,
I am on MTX and my Rheumatologist also described the additive effects
as noted in the moderators comments. Previous to being on MTX, I was
a social drinker. I usually had 1,2 drinks on any given week end
night, and an few occaisions 3. During the week I rarely had any
alcohol. But I also questioned "Would 1 drink hurt?". While It's
not clear if an occaisional drink would really cause any harm, I
believe you should ask yourself, "What's more important to me a drink
or my health?" and why not be the designated driver? While I would
never consider myself to be an alcoholic, let's face the truth, most
people(myself included)drink to feel the effects of alcohol. 1 drink
is not likely to give you that effect, so why take chances with your
health? If you really want to "get drunk", MTX probably is not a good
choice of medication. Yes I have chosen a hard line approach for
myself and realize that people will have differing views(and I am
sure that to hear them) but I went through a long time of horrible
pain & despair. Then I went on MTX and my quality of life has
changed dramatically, I am not going to knowingly do anything to mess
it up. You have to make a decision that is right for you and one that
you can feel right about.
I hope this helps you to make your own decision.
Be Well,

no particular reaction at all from alcohol due to being on MTX (other
than the slight inebriation that's normal from alcohol of course). My
rheumatologist explained it to me thusly: MTX is toxic to your liver,
and so is alcohol. As long as you have a reasonably healthy diet so
that you get all the nutrients you need, your liver can repair itself
from damage done by moderate use of either of these toxic agents.
When you combine them together however, it's more difficult for the
liver to repair itself. Having one drink isn't (in my rheumy's
opinion) going to cause a noticeable problem. What *is* likely to
cause a problem is chronic or constant consumption of excess amounts
of either of these toxic agents (MTX and alcohol) either alone or
especially in combination - in other words the damage done by each of
them is more or less additive. My rheumy is Armenian, and one thing I
found interesting (in fact she mentioned it to me in muted tones
almost as though she wasn't supposed to be saying it to me) is that
most doctors in Europe don't caution their MTX patients about
refraining from alcohol consumption at all. I imagine it's done here
in the USA primarily because of all the malpractice suits. In fact,
if you read the PDR information on MTX, it only cautions about
*excessive* alcohol consumption - not "normal" alcohol consumption. I
view it as a statistical thing - much like a crap shoot. Your chances
of rolling craps on any single throw of the dice is only 11%, but the
chances of rolling craps sometime during a sequence of 100 rolls is
99.999%. The tradeoff between acceptable risk and happiness is, and
hopefully always will be, a personal decision. Ron]

Re: [PsoriaticArthritis] employment

2008-07-28 21:40:11

Hi Cheryl,
I can't give you any suggestions about how to find work, as I have no idea,
but I work at home as a translator, and when my arthritis started to flair
last year I went right out and bought the dictation software that all my
fellow translators had been forever recommending. It takes some getting
used to but it is a great help. I was a slow typist to begin with, but even
the fast typists say that it's great to be able to switch off. And for me
it feels like insurance in case I get a bad flair when I have a deadline...
The lastest version (6.0) of Dragon Naturally Speaking costs plenty (I
bought the Preferred version 5.0 last year because it works in both Italian
and English), but someone on a translators' mailing list recently forwarded
the info I'm pasting below about the old Preferred version (5.0) on sale
for a very low price. Only in English, of course. (No, you cannot add
language modules.)
__You cannnot update it to the new version (6.0)__, but it is the version I
work with and I assure you that it works very well. (Though you need a bit
of patience to train it at first, and remember the vocal commands--and no,
I don't manage anywhere near 140 words/minute!)
I don't know if there are any left (the site below is _not_ the official
website, just a retailer), but otherwise you may find it in stores or
elsewhere for an equally good deal. There is also Via Voice, but most
translators seem to prefer Dragon--they say it is both faster and easier to
use.
Just reporting from experience and hearsay--obviously I have no interest in
the company. Actually it is constantly getting sold...
The official website for support now is www.scansoft.com
Good luck--I'm sure you'll find plenty of work.
Maureen in Italy
(forwarded message)
Don't Type.... Just Talk!
Dragon's Naturally Speaking 5.0 Preferred Software
lets you TALK to your computer!
Do you type 30 Words per Minute?
Try dictating 140 Words Per Minute!
Just speak, and your words appear on the screen. No
confusing setup - and no additional hardware needed;
we give you the microphone too.
Sound like science fiction? Well now it's a reality,
and you can get this amazing software for just $29.99!
That's 85% of the retail price of $199!
Supply is Limited.
===
into the free bonus microphone.
===
Internet Explorer, Microsoft Word, Excel, Office,

Re: [PsoriaticArthritis] Question about Methotrexate

2008-07-28 15:42:49

Hi Beth Ann,
My rheumy cautioned against any alcohol consumption on the days I take MTX,
but said that a glass of wine to celebrate a birthday or at a holiday table
would not be a problem. Presumably your rheumatologist has already ordered
you to have a follow up blood test in a month or 6 weeks in order to monitor
the effect MTX is having on your liver and other functions. This will be a
better indication of whether you can be on MTX with an occasional (emphasis
on occasional) drink, than an outright prohibition on drinking. I don't care
if I never have a drink, but I have a friend who has been on MTX for about 17
years, and she has continued to drink in sincere moderation without any
adverse liver problems throughout that period. There are many
rheumatologists, however, who caution against any alcohol whatsoever.
I am sure the holidays will be more enjoyable for you once MTX starts helping
you with or without glass of wine.
Best wishes,
Kathy

Psoriatic Arthritis??

2008-07-28 06:53:17

Hi everyone, my name is Christine, I am a 31 year old mom of a 4 year
old and a 1 year old. I have had psoriasis for many years. I guess it
has been pretty mild, a few patches on my legs and scalp.
My problem is this, I went to a Rheumatologist and he is trying to
diagnose the pain that I have been feeling for over 10 years off and
on. He is stuck between psoriatic arthritis and Fibromyalgia. I was
hoping maybe you can give me some help..
The pain I feel is inbetween my shoulders, and generates up into my
neck and through my chest. It can get extremely painful one minute
than not so bad the next. General movement does not hurt, just
sitting still hurts. I don't beleive this is arthritis of any kind.
It used to last a couple of days but this time I've been in pain for
over 2 weeks!
The Rheumatologist has prescribed amitrptylin. But i have tried
vioxx, bextra, and muscle relaxants. Advil helps sometimes, not
Tylenol.
SO, through peoples experiences I was wondering if you could tell me
if theses symptoms sound familiar to any of you. Are there any test
that can be done to test for it? I have a feeling it is not Psoriatic
arthritis, but instead Fibromyalgia. But any help would be great!!
Thanks so much ! :)

Question about Methotrexate

2008-07-28 00:01:21

Hello everyone,
I was just put on Methotrexate and have only been on it for 2 weeks
now. I noticed on the prescription bottle that it says avoid
alcohol. I normally do not drink that much anyway, just socially,
but I was thinking with the holidays coming up that I would like to
have a glass of wine with our holiday dinner. Does anyone know if
that is okay, and what would be the reaction if I did have a drink?
Thamks in advance for any advice. Beth Ann
[Moderator's note: Hi Beth. My personal experience is that there is no
particular reaction at all from alcohol due to being on MTX (other than the
slight inebriation that's normal from alcohol of course). My rheumatologist
explained it to me thusly: MTX is toxic to your liver, and so is alcohol. As
long as you have a reasonably healthy diet so that you get all the nutrients you
need, your liver can repair itself from damage done by moderate use of either of
these toxic agents. When you combine them together however, it's more difficult
for the liver to repair itself. Having one drink isn't (in my rheumy's opinion)
going to cause a noticeable problem. What *is* likely to cause a problem is
chronic or constant consumption of excess amounts of either of these toxic
agents (MTX and alcohol) either alone or especially in combination - in other
words the damage done by each of them is more or less additive. My rheumy is
Armenian, and one thing I found interesting (in fact she mentioned it to me in
muted tones almost as though she wasn't supposed to be saying it to me) is that
most doctors in Europe don't caution their MTX patients about refraining from
alcohol consumption at all. I imagine it's done here in the USA primarily
because of all the malpractice suits. In fact, if you read the PDR information
on MTX, it only cautions about *excessive* alcohol consumption - not "normal"
alcohol consumption. I view it as a statistical thing - much like a crap shoot.
Your chances of rolling craps on any single throw of the dice is only 11%, but
the chances of rolling craps sometime during a sequence of 100 rolls is 99.999%.
The tradeoff between acceptable risk and happiness is, and hopefully always will
be, a personal decision. Ron]

Re: Miscellaneous comments/Nightshade Plants/Bone Damage

2008-07-27 19:30:47

A couple of years ago I had a Fall garden, and I had a bumper crop of
tomatoes, eggplants, and bell peppers. I found the best recipe for
all of those together and we ate a bunch of it!! I don't know when
we have eaten so many tomatoes!! Right after that, I had a major
flare in my shoulder, where my PA had been at a medium level before
that.
On to the next part of the subject--bone damage. My shoulder was
killing me, and I got a steroid shot in it, which helped, but after a
couple of months, the pain came back with a vengeance. My RD sent me
to a pain mgt doctor/physical therapist to work on it. I got x-rays,
and it showed no damage. After making no progress, I went to an
orthopedic shoulder specialist who ordered an MRI for me. We were
thinking it might be a torn rotator cuff, which could be reattached.
Come to find out, my rotator cuff tendons were completely destroyed
by the PA, and there was nothing to reattach. So--I had major damage
to my shoulder, and nothing showed on the X-rays. But, skip down to
the present time--I have lost mobility in my shoulder and don't have
much range of motion, but since starting Enbrel, I have very little
pain. Before, excruiating pain and no range of motion when I did
manage to use my shoulder--now, limited range of motion, but little
if any pain. It all happened so quickly also. At that time, I was
on MTX, prednisone and Celebrex. I am now on Enbrel and Celebrex.
I am a firm believer that aggressive treatment should be taken--don't
wait until you have major damage before aggressive treatment is
done. I was started out on sulfasalizine, which I don't think did
much, and then started on MTX. By the time I got on MTX, I already
had so much damage done to my foot that foot surgery was required.
And, all the damage to my foot did not show up on X-rays. My
orthopedic foot doctor was shocked at how much damage I had that he
didn't discover until he went in for the surgery.
I voice others' comments...if I could do it over, I would opt for the
most aggressive treatment.
Sandy

Re: [PsoriaticArthritis]severe neuropathy of feet and ankles

2008-07-27 09:30:43

I have been following the messages regarding neuropathy in feet, ankles and
hands. While I have noticed some gradual increase in pain, swelling and
tingling in hands, it is my feet and ankles that hurt all of the time--but are
much worse at night 'in the prone position' just as you describe. Two years ago
the neurologist I see for migraines ordered a test which demonstrates nerve
activity for my feet, ankles and legs with negative results.
The constant pain, tingling and numbness have become such a problem for me that
I am once again seeking relief, inspite of currently taking 1200 mg. neurontin
and darvocette on a daily basis. At night I cannot sleep because of pain in
feet and lower part of legs and ankles, so I take trazadone every night in order
to go to sleep.
My rheumy is not receptive to idea of neuropathy because of negative test two
years ago, so has referred me to an orthopedist who specializes in treatment of
the feet. I saw him this past Tuesday and he noted nothing remarkable about my
response to his poking and prodding of joints in my feet. He has ordered a
'bone scan total body' with dye inserted in veins three hours before bone scan
in order to compare damage from psoriatic arthritis in other parts of body to
damage seen in feet.
I am dreading this procedure on December 5--I have the added complication of
being allergic to the dye, requiring medication to be administered to prevent
allergic reaction. Plus it will require another missed day from work--my next
remicade infusion is scheduled December 12. It seems as though I am constantly
having to adjust my work schedule for appointments, even though I only work
part-time. Depending on the results of this bone scan, a MRI will then be done
on feet and ankles.
My next appointment with neurologist is in January, so I guess the results of
this test will assist him in addressing possibility of neuropathy. Neurontin I
take is prescribed for migraine prevention and has decreased number of migraines
dramatically (from several a week to 1-2 a month).
All of your support and willingness to share your experiences fighting PA help
me tremendously. Thanks to each of you and wishing you well--Linda in VA

Re: throat pain

2008-07-27 01:09:19

A while back someone said there were a couple tiny bones in the
throat that can get inflammed and cause throat pain. Don't remember
the location of the bones.
Sorry, PAtb
--- In PsoriaticArthritis@y..., "Troy & Cheryl Samons"

mean inside where you swallow, but sort of above the "adam's apple".
I have had a slight pain for a while now and my primary just felt it
and said she didn't feel anything. But now it's getting more
pronounced. Could this be from PA?

Re: Miscellaneous comments

2008-07-27 00:08:53

Kevin,
As far as allergies especially wheat and dairy they can cause upset
to the bodies system. Refraining from eating chili and tomato based
foods will mean the next day I'm not swelling due to the allergies.
But to extend it to say it provokes the P and PA as a solution to
minimizing the P and PA is too much of a stretch. At my worst point
with this I went on a diet that according to that scenario would have
made me clear of symptoms but it was the worst time of my PA.
Allergies can aggravate but they aren't the cause of P or PA in my
opinion.
When someon has slightly elevated blood pressure they can lose weight
and stop taking the blood pressure medicine. There are studies that
show it to be true for blood pressure but not PA.
If it were true many of us wouldn't be suffering.
PatB

Re: [PsoriaticArthritis] Miscellaneous comments

2008-07-26 14:25:34

I have put this out here before and didn't get much feedback, but here it
goes again. I attended a seminar given by a homeopath that claims there is
a relationship between food alergies and diet and immune system illnesses.
The claim he makes is that an imbalance in your bowel system gives your body
the impression it has an infection which causes your immune system to kick
into overdrive causing psoiriasis and in turn PA. Apparently wheat and
dairy are by far the worst culprits. I am curious as to whether or not
anyone has tried adjusting their diet and what kind of results they
achieved. I myself am to weak and love to eat so i have not been able to
try it. besides how do you make a sandwich without bread. anyway i thought
i would mention it again and see what kind of response i get. My rheumy
claims there is no corelation between diet and p/pa but i know for a fact if
i eat ribs i have trouble getting out of bed in the morning.
hope everyone is well
kevin in ottawa,ca
p.s. i work with a fellow that has crones which is also an immune system
illness , he has been off meds for over a year by changing his diet and
losing excess weight. he was on meds for ten years.

Research on coping with Arthritis

2008-07-26 04:59:04

My name is Fuschia and I have arthritis (Reiters Syndrome) and
psoriasis. I am also a
doctoral student in Psychology at Carleton University in Ottawa, Canada,
and myself and my advisor Mary Gick Ph.D. are conducting research on the
well-being of people with arthritis. We are interested in examining how
attitudes towards health are related to well-being and adjustment to
arthritis - in other words how does Psoriatic arthritis affect your life
ad what do you do to cope?
The online version of the study is now available at:
http://www.carleton.ca/~fsirois/arthritis/index.htm
If you have any form of arthritis (RA, Osteo, Lupus, AS, Fibromyalgia,
Psoriatic , Sjogrens, etc.) and are interested in participating simply
follow the above link and read over introduction page, then link to the
survey. We estimate that the survey takes about 30-45 minutes to
complete and all information will remain anonymous and confidential. If
you have arthritis and live in Canada or the US but feel uncomfortable
with completing the online survey we can send you the survey package
which includes instructions and a postage paid envelope for its return.
We will also produce a brief online report of our findings for anyone
interested in the Spring and post a notice here again when it is ready.
Feel free to pass along the survey address to anyone else you know with
arthritis who may be interested. Thanks so much for reading this and for
your interest and support this research doesnt happen without you!
Fuschia
--
Fuschia Sirois, M.A., B.Sc. (Hon.)
Ph.D. candidate
Department of Psychology, Carleton University
1125 Colonel By Drive Ottawa ON Canada K1S 5B6
613-520-2600, ext. 3781
fsirois@...

Re: [PsoriaticArthritis] "OT" Doctors Patient Choices

2008-07-26 04:25:28

In my experience, I have had a doctor who was treating my husband
(urological) write to say that she felt it would be in my husband's best
interest to find a doctor more suitable to his thinking. When you think
about it like all people, doctor's can't possibly get along with
everyone. If you can't have a trusting, working relationship, what good
comes out of continuing to work with each other? Of course, it would be
unethical to just drop you with no care in place.

Re: [PsoriaticArthritis] Dr appt for Baby and I...

2008-07-26 02:54:09

That's great news Pam. Will continue to hold good thoughts all turns out
well.

Re: YEA!!!!!!!!

2008-07-25 16:05:14

Congratulations!! As an Enbrel user, I share with the excitement you
have in getting the good news. Other than my husband, no one could
understand the excitement and relief I felt when I was notified--I
was almost in tears (actually, I think I did shed a few tears). Who
knows, it may not work, but you will never know if you don't give it
a chance. Enbrel has made a major difference for me--I hope that it
brings the best for you too. I feel like I could do one of those
commercials--I have my life back!! Let us know when you finally get

Re: [PsoriaticArthritis] A very bad day!

2008-07-25 09:38:05

My doctor is so sympathetic and constantly tries to get me to use more
medications so I don't have to live with chronic pain. I have no visible
joint damage. Right now, I don't even have swollen fingers or toes. He
still understands how much pain I experience and how much fatigue it causes
to live with that constant pain.
Get yourself a new doctor immediately!!!!
Ks Di

Psoriatic And Osteoarthritis

2008-07-25 05:55:27

I have finally gone to a new rheumatologist who has discovered that
the pain in my lower back is not responding to PA treatment because
it is a degenerative arthritis. It is between my L4-5 and L5-S1. I
understand that S1 means my sacroiliac which makes sense since I have
broken my tailbone 5 times over the last 30 years.
Has anyone had experience in treating both types of arthritis
simultaneously? I am currently taking 17.5 mg methotrexate in tablet
form once a week and am on 75 mg 2x daily of Voltaren besides 1 mg
folic acid daily.
What is standard is this situation? The pain in my lower back is
making my life pretty much without much walking or standing.
Suzy

Re: Fw: Skin Warning for Painkiller Issued

2008-07-24 22:00:01

Janice
Hello,
As a Bextra user, I looked around on the internet, and it looks like
this warning is used for a lot of drugs and other NSAIDS including
Daypro. It is also incredibly rare.
:o)

Re: A very bad day!

2008-07-24 20:15:41

I don't have alot of bone damage,but I was in alot of pain,just a
couple months ago. My rhuemy told me that he felt that lack of a
good nights rest was causing anxiety/depression and that he thought
that some of my pain was caused by muscle spasms. I didn't think he
was right, but the pain was bad enough I was willing to give
anything a try. So he gave me flexeril(along with bextra I was
already taking) and after about a week, I did feel much better. I
still have some pain, but not nearly as bad. He told me that
depression/anxiety would amplify the pain. You said that you are not
sleeping very well, maybe this could be making your pain seem worse.
So I would mention this to your next rhuemy. Mine did not suggest
phyc. to treat me and what he did worked. I think that I would find
another rhuemy too. It sounds like this one is giving you a cop out,
he can not find a solution so the problem must be in your head, what
a jerk!
--Merribeth

neuropathy as a complication of Sjogrens

2008-07-24 12:29:10

I too have severe neuropathy of the extremities- both hands and the
ankles/feet. The worst is nighttime in bed in any prone position at all.
That is why I have had to give up my regular bed for 18 months now. I also
have severe nerve pain that is a residual from a fall I took in Boston in
2000. The surgery I had on the lumbar spine cured the spine pain- but
somehow the connecting nerve is still "hot" from the outer hip to the ankle
region on the right side. I recently had EMG testing of both arms and legs
and it showed problems with all the nerves in all extremities. Apparently it
is not the myelin, but the inside of the nerve that is not carrying the
impulse properly. At first the doctor (neurologist) had given me medication -
Topamax - to try, and the added bonus was that the new medication is
considered to be extremely effective in preventing migraines for those of us
(like me) who get them several times a week.
Once my neuro looked at the last readings on the MRIs that I had done in
2000-- she freaked on the neck problem. According to her- with the bad EMG
and the MRI showing what it did- even in 2000- combined with my symptoms, I
need a surgery for cervical spine stenosis right away. Needless to say, I
was shocked. I was expecting her to get me started for IV gammaglobulin
treatments. The last time I saw her she had me convinced that my Sjogrens
Syndrome was causing the peripheral neuropathy and that the IV treatments
would help..I am to stay on the medication- Topamax- it is working really
well for the migraine prevention- only get 1-2 a month now- and unlike
Neurontin which is known to cause weight gain--Topamax causes weight loss in
most people. I can vouch for an extremely diminished appetite.
I will keep in touch. Peace be with you all.
Michelle
group founder
I will be getting the C-spine and the L-spine done on This Sunday at Danbury
hospital. They run the machine all weekend! Then we will have more answers.
I f I had to guess right now, I would say that the Sjogrens is the problem
with my ankles and feet, and that I probably do need surgery of the C-spine
to clean out all the arthritis that has grown into the spinal canal and that
is crowding the spinal canal.
I'll keep in touch.

Re: waiting for diagnosis

2008-07-24 01:54:27

Hi Meg,
Sorry to hear of all the pain and other symptoms you're suffering.
You ask whether you should insist that your doctor send you to a
specialist, since he has said that he won't do so, despite all of
your symptoms.
I would definitely insist -- and if he refuses, find another doctor
who will. You deserve to have this looked at by a rheumatologist.
It took me much too long (almost 4 years) to get my diagnosis of PA,
even though I strongly suspected I had it. I think I should have
been more insistant earlier on.
From what I've read on this site, PA is hard to diagnose and many
doctors are either uneducated about the subject or too conservative.
If it is PA, you need appropriate treatment and the sooner the better!
Sharon

Re: [PsoriaticArthritis] bextra

2008-07-24 00:43:19

In a message dated 11/19/2002 1:22:35 PM Eastern Standard Time,
magicman99@... writes:
I had horrible headaches! And to top it off, my Insurance company would only
pay for 20 pills every 30 days so there was no way I could stay consistently
on the medication anyway.

Re: [PsoriaticArthritis] waiting for diagnosis

2008-07-23 21:02:41

YES, I get to A Rheumatologist now.
You should go ahead and fill the Vioxx. That is a good
start to see if it works. If it doesn't, there will be
many more things to try that are a lot worse than
Vioxx.
Good luck,
Scott in Atlanta, GA

Re: [PsoriaticArthritis] Digest Number 1607

2008-07-23 08:22:58

In a message dated 11/19/2002 8:12:45 AM Central Standard Time,

Re: [PsoriaticArthritis] PA and fifth's disease

2008-07-23 02:35:35

In a message dated 11/15/2002 6:06:02 PM Eastern Standard Time,
nutter@... writes:
Yes!! That's what my primary originally thought I had that brought on my
first flare. At the time, we didn't know I had PA. But the aches that
stayed after the Fifth's was cleared up was the PA.
Tracy

Re: [PsoriaticArthritis] Hello I'm New

2008-07-23 00:48:34

Welcome to the group and please accept my sympathy. I feel so fortunate
that I did not suffer greatly until my children were old enough to fend for
themselves. I have started working part time and am lucky I was allowed the
flexibility to do it. I think I would be too depressed if I had to quit
completely. I am a teacher and love every minute of it.
Diabetes is a nasty complication. I wish you well.
Ks Di

Re: [PsoriaticArthritis] Fw: Skin Warning for Painkiller Issued

2008-07-22 13:48:12

Hi Joe,
Is there a problem with the bextra? This is the only thing that I have
found to help at all.
Janice

Re:TMJ- jaw problems

2008-07-22 07:56:04

Hi everyone-
you can count me in for having had severe TNJ type jaw pain for years that
ended up moving out of those joints after around three years of agony- thank
God. It was one of the first problems I had that I did not realize at the
time was PA related.
Michelle
group finder

PSORIATIC ARTHRITIS NEWSLETTER NO. 31

2008-07-22 02:19:18

PSORIATIC ARTHRITIS NEWS AND VIEWS
VOL. 2 ISSUE 24 November 15, 2002
PSORIATIC ARTHRITIS MEDICAL NEWS
One of the many resources that I use to research information for our group is
called Healthtalk.com They have a series called HealthTalk Interactive from
Seattle, and recently featured a program called ArthritisTalk. I have taken
the liberty to include the transcript of the entire program, since the topic
(Remicade, Enbrel, Methotrexate, D2E7, etc.) is pertinent to all who suffer
from Psoriatic Arthritis.
"RA TREATMENTS: NEW MEDICATIONS AND NEW INDICATIONS"
Introduction
Gina: Hello and welcome to ArthritisTalk. I'm Gina Tuttle. Not long ago,
people diagnosed with RA were told to take lots of aspirin and buy a
wheelchair. With the advent of advanced therapies such as biologics, all that
changed. Today we're going to look at what's available now and what's coming
up in the management and care of rheumatoid arthritis.
Here with me is Dr. Michael Schiff, medical director of the Denver Arthritis
Clinic Research Unit and professor of clinical medicine at the University of
Colorado School of Medicine, Rheumatology Division. Mike, things have really
changed for rheumatologists and RA patients in the last ten or so years,
haven't they?
Dr. Schiff: Gina, actually, it's really since 1998 that things have changed,
and there have been many new therapies that have been available to us as
rheumatologists to offer to our patients with rheumatoid arthritis. Also, the
evidence-based medicine, the knowledge that we have actually of some older
medications such as methotrexate and sulfasalazine, have only been proven to
be disease-modifying drugs really since the late 1990s, so the explosion is
very recent, and it's an ideal time if one is going to get rheumatoid
arthritis.
Gina: We've got a lot to cover, but first we're happy to tell you that this
program has been sponsored through an unrestricted educational grant from
Amgen Incorporated and Wyeth Pharmaceuticals. We thank Amgen and Wyeth for
their support and their commitment to patient education
And before we get too far, I'd like to remind you that the opinions expressed
on this program are solely the views of our guests and not necessarily the
views of HealthTalk Interactive, our sponsor, or any outside organization.
Please consult your own doctor for medical advice most appropriate to you.
The advent of biologics
Gina: Mike, you were involved in the clinical trials for Enbrel that took a
whole new approach to combating the inflammation and the pain associated with
rheumatoid arthritis. What was your reaction when you found out that a TNF
inhibitor had been developed? "Between 1994 and 1998 we were able to show
that [Enbrel] decreased TNF in patients with rheumatoid arthritis and made
their arthritis much better."
Dr. Schiff: I was involved starting in about 1994 with some of the original
trials in rheumatoid arthritis using this sort of anti-protein. Essentially,
what Enbrel is, is a protein that decreases or down-regulates a protein
called TNF, which is the protein that is increased in patients with
rheumatoid arthritis and therefore causes the inflammation, causes the
fatigue, and subsequently causes the disability and the need for wheelchairs.
The original data suggested that it was safe. Between 1994 and 1998, we were
able to show that this biologic therapy decreased TNF in patients with
rheumatoid arthritis and made their arthritis much better.
Between 1994 and 1998, we were able to show that [Enbrel] decreased TNF in
patients with rheumatoid arthritis and made their arthritis much better.
Gina: Was that exciting for you?
Dr. Schiff: Oh, this was some of the most exciting times in my career as a
rheumatologist. Starting rheumatology 27 years ago, while we were giving
aspirin as you mentioned in the beginning, we often had wheelchairs in our
clinic that were used or overused, and since we've had the ability to use new
therapies, especially therapies such as methotrexate and Enbrel and other
anti-TNF and biologic agents, we've pretty much put our wheelchairs to rest.
Actually, the other day we needed a wheelchair in the clinic, and I found out
that both of them had flat tires, and no one noticed that for at least a
year, and the wheelchair was for me because I had slipped my L4-5 disc.
Gina: Well, I hope that you're okay now.
Dr. Schiff: I'm feeling much better, thank you.
Gina: Good.
Differences between Enbrel and Remicade
Gina: The other TNF inhibitor, Remicade, is different in terms of development
and application than Enbrel. Can you explain in what ways?
Dr. Schiff: Yes. One of the pivotal discoveries was that this little protein,
TNF, which is called a cytokine, is significantly increased in the either the
joint lining or in the fluid [in the joint]. Normally, all of us make some
TNF, and there's a biologic purpose in it, and another protein, which is
called a soluble TNF receptor, keeps it in balance in our system.
Rheumatoid arthritis patients [make too much] of the TNF protein, and they
make a normal amount of this soluble receptor. And essentially, what Enbrel
is, is this soluble receptor, and it puts the patient back in balance. It's a
human protein. It's pretty much the same as you and I make naturally.
"Giving methotrexate, which is a standard drug in rheumatoid arthritis,
decreases [allergic] reactions with Remicade."
Remicade is something called a monoclonal antibody, meaning it is a protein
made against TNF where it sticks to TNF like a magnet would stick to a piece
of iron. It's made, however, with a mouse part, and then a human protein is
added to make it less allergic or immunogenic. So, it works a bit
differently, and it has the concern that one could be allergic to the mouse
part of the Remicade, but giving methotrexate, which is a standard drug in
rheumatoid arthritis, decreases these reactions with Remicade.
When to start biologic therapy?
Gina: At what point in rheumatoid arthritis should a patient be considered
for biologic therapy?
Dr. Schiff: Well, I think, Gina, if I could maybe go back one step, I think
that anybody who thinks they may have rheumatoid arthritis or anyone who has
swelling of joints really needs to find out what their diagnosis is. Early
diagnosis and early intervention if it is rheumatoid arthritis is really very
important. Once the diagnosis is made of a patient with rheumatoid arthritis,
we used to teach 10 or 20 years ago that we would wait until the x-rays
showed damage. We would wait for at least a year or two before we would
initiate any therapy more than aspirin or non-steroidals.
"What I would recommend to anyone out there who has rheumatoid arthritis --
early diagnosis, early consultation with a rheumatologist and early
intervention with either a biologic or a synthetic, which would be medicine
such as methotrexate or Arava."
But now we know that if we initiate medication such as methotrexate or
Enbrel, and a study was done and published in The New England Journal showing
that both of those medications initiated early will not only make our
patients feel better, will make our patients able to carry on activities of
daily living such as going to work and taking care of their kids and
functioning, playing golf or bowling or basketball or whatever they want to
do, but it also slows the x-ray damage or the destructive changes down.
So, what I think I would recommend to anyone out there who either has
rheumatoid arthritis or may think they have rheumatoid arthritis or swollen
joints, again, early diagnosis, early consultation with a rheumatologist to
say this is or isn't rheumatoid arthritis, and early intervention with either
a biologic or a medication we call a synthetic, such as a pill, which would
be medicine such as methotrexate or Arava.
Why use methotrexate?
Gina: And most people with RA, I believe, are on methotrexate. Why would that
be?
Dr. Schiff: Well, methotrexate back in the '90s really became a therapy, and
it became a therapy of choice because we didn't have a lot of other choices,
and we had no biologic agents in those days. So, we borrowed this
chemotherapy agent from our oncology friends. We use it in much smaller doses
than our oncology colleagues, and we found that it was very effective in
decreasing pain and swelling and inflammation of rheumatoid arthritis. Not
until a publication in 1999, however, did we actually really demonstrate that
methotrexate was a disease-modifying drug and slowed x-ray progression.
"[Methotrexate] became the drug in the '90s to use, and we are still using
it because it is effective; however, methotrexate has concerns, as any other
therapy does."
So, it became the drug in the '90s to use, and we are still using it because
it is effective; however, methotrexate has concerns, as any other therapy
does. One can't drink alcohol with it because of its liver concerns and
problems. It can affect the kidneys on a rare occasion; it can affect the
lungs on a rare occasion; it can affect the bone marrow on a rare occasion,
and it can affect, again, other things such as causing sores in the mouth or
the nose.
Advantages of biologic therapy
Gina: What are the advantages of biologic therapy?
Dr. Schiff: Well, biologic therapy brings a couple of major advantages to our
patients with rheumatoid arthritis. One, in a study that we've already
presented and have now written up that will be published in the new few
months, we've been able to show over the long term, that is, a number of
years, that biologic agents actually slow x-ray damage down more than
methotrexate. So, I think the advantage again may be that it may be more
powerful.
"Biologic agents actually slow x-ray damage down more than methotrexate."
Another advantage is that initially when we start methotrexate or a biologic,
the biologic works much more quickly. The biologic will relieve fatigue, pain
and swelling sometimes within a matter of hours to days or weeks where
methotrexate we're looking at weeks to months. And the other advantage is
that with methotrexate there are probably significantly more side effects
that are known, and one needs frequent trips to the physician or the
rheumatologist's office for blood tests, which you don't need with the
biologics.
Disadvantages of biologic therapy
Gina: Are there any disadvantages with the biologics?
Dr. Schiff: Well, I think one of the disadvantages that is not truly a
disadvantage but a theoretical disadvantage is that we have been using
methotrexate now probably for over 20 years in rheumatoid arthritis, and
easily in many of our patients as you and I just mentioned for the last dozen
years in rheumatoid arthritis. So, we have a long track record with
methotrexate, and we know many of its side effects including liver and bone
marrow troubles.
"We have a long track record with methotrexate, and we know many of its side
effects including liver and bone marrow troubles."
With biologics we don't have this large, robust group of patients who've been
on it for ten years. As a matter of fact, we don't have that at all. However,
we just presented our five-year data on Enbrel at an arthritis meeting
showing that Enbrel over a five-year period of time was safe. We've published
in The Journal of Rheumatology our four-year data, again showing that Enbrel
as a biologic was a safe therapy in our patients with rheumatoid arthritis.
So, again, a theoretical disadvantage would be, I guess, not knowing what the
ten-year data shows, so you have to invite me back five years from now.
Gina: Is Remicade as safe as Enbrel seems to be? "Enbrel over a five-year
period of time was safe."
Dr. Schiff: Remicade has some other concerns that Enbrel doesn't. As I
mentioned, since it's called a chimeric protein -- chimeric definition means
it's made of two animals, or one is mouse, and one is human -- one has this
allergic problem and one does have to take it with something else such as
methotrexate, although recently we presented data showing safety in taking
Remicade or infliximab with a newer drug called leflunomide or Arava. One
takes this intravenously so that you go to the doctor every two months, and
that may be an advantage to the patient, but one could have more allergic
problems with the Remicade with the Enbrel.
Arava
Gina: And Arava, that's a fairly recent arrival. That's how it fits in, in
combination with the others?
Dr. Schiff: No. Arava or leflunomide came on the scene about the same time,
actually, or just before Enbrel, about 1998. I've been working with this
compound since the mid-'90s and actually have a patient on it over five years
now, and it can be used as what's called monotherapy, meaning as a single
agent, much as we would use Enbrel as a single agent or we would use
methotrexate as a single agent. Again, as I mentioned, Remicade needs to be
used in combination with something else. Arava has been shown to be able to
be mixed with, as I mentioned, Remicade in our study, and it's been able to
be mixed with methotrexate in a study from the Albany Medical Center showing a
gain that again careful monitoring, that one could mix these compounds, and
it adds a choice to our patients with rheumatoid arthritis.
Do biologic therapies work for most people?
Gina: Methotrexate seems to work for a great number of people. How about the
biologic therapies? Do they work for everyone?
Dr. Schiff: Well, I wish we had the drug that worked for everyone. Then they
wouldn't need rheumatologists. They could just go to the local pharmacy and
say that they want the treatment for rheumatoid arthritis.
Methotrexate actually -- there's a feeling that it works for everyone, but
I'd really like to correct that feeling. Doing our clinical research and
clinical trials and evidence-based medicine, we often do placebo-controlled
trials, meaning the patients and the doctors don't know if they're getting
methotrexate or if they're getting placebo. We also do comparative studies
such as comparing head to head, which we've done in clinical trials and have
published -- methotrexate versus Arava, methotrexate versus Enbrel.
And if you look at the data, methotrexate again, in a research unit where the
patients are carefully followed and the patients are blinded and don't know
if they're getting methotrexate or not and the physician doesn't know, really
is about a 50 to 60 percent good medicine. So, we're looking at about 40
percent of patients who really don't respond to methotrexate. And that's why
the 1990s were the age when we as rheumatologists before we had biologics
were mixing many medicines with methotrexate, and we still do mix many
medicines with methotrexate, and that's because patients have incomplete
responses or don't have responses to methotrexate.
Gina: So, what about the biologics? Do they seem to help more people? "If we
look at our long-term studies, it looks like that Enbrel is probably a little
bit better and more likely to work than methotrexate."
Dr. Schiff: If we look at the clinical information, and one has to do this
with a special caveat because none of these groups of rheumatoid patients are
exactly equal, but if we look at the group of patients on Remicade, we're
getting responses in the same ballpark as we did with methotrexate alone
although those probably were more difficult patients. Not that the patients
were difficult, but their arthritis was. If we look at the Enbrel data, on
the other hand, we're getting responses that are better, and if we look at
our long-term studies over the long haul, it looks like that Enbrel is
probably a little bit better and more likely to work than methotrexate.
Kineret
Gina: A new biologic called Kineret was just approved in November of 2001.
How does that work?
Dr. Schiff: Well, as I mentioned, this protein called TNF is increased in
rheumatoid arthritis in the joint as well as in the joint fluid of patients
with rheumatoid arthritis. This protein is called a cytokine. I'm sure you
know, Gina, what a hormone is -- much like thyroid hormone is a protein
that's made in the thyroid gland in the neck and then is shipped around the
body to tell the rest of the body what to do.
A cytokine is a hormone. It's a protein shipped around the body to tell the
body what to do, but it can be made not just in one place like thyroid but it
could be made in many different cells and many different places in the body.
So, one should think of the cytokine, as my wife often comments, the e-mail
of the immune system. It says "Forward to All," and it goes to all of your
joints, causes arthritis, goes to the rest of the system, and causes things
such as fatigue.
The other cytokine besides TNF that is increased in rheumatoid arthritis is a
cytokine that's called called IL-1, and IL-1, much like TNF, has a naturally
occurring blocker that's in balance like TNF as I mentioned has a soluble TNF
receptor, which Enbrel is, that puts us back in balance in the body. The
anakinra or Kineret, the new biologic, is a balancer of this increased
cytokine that causes arthritis, and it's an interleukin-1 cytokine balancer.
Gina: So, how do you expect it's going to be used?
Dr. Schiff: Well, I think at this point in time, many physicians have gotten
very comfortable using methotrexate, and therefore methotrexate is often the
first therapy started just because of comfort levels. Biologics, or
especially the anti-TNF agents, are becoming actually traditional choices in
rheumatoid arthritis, and Kineret will probably be used in patients who are
not doing quite as well either on one of the older biologic agents such as
Enbrel or Remicade or patients who are not quite doing as well, let's say, on
methotrexate or Arava.
"Kineret will probably be used in patients who are not doing quite as well
either on one of the older biologic agents such as Enbrel or Remicade."
I would caution, though, the people listening that we actually did a study
and presented this at the last national arthritis meeting where we combined
anakinra or Kineret with Enbrel, and there was a slight increased risk of
infection. So, right now we're studying that to see if that's dose-related or
how we can adjust the doses to make this work because right now that is not a
standard recommendation, but mixing Kineret with methotrexate or with Arava
has been shown to be safe and efficacious.
Antibiotic therapy & RA
Gina: I understand sometimes rheumatologists prescribe antibiotics. Explain.
Dr. Schiff: The antibiotics story is very interesting, and it's very old.
Many people who have rheumatoid arthritis, and I'm sure many people listening
to this who have arthritis, think of their arthritis sort of like having a
bad flu. They feel fluish all the time with fatigue. They have aches and
pains in their muscles and their joints, and it just feels like you have the
bad flu that just lasts the last ten years. And it would suggest that maybe
there's an infectious trigger. Rheumatoid arthritis oftentimes, Gina, will
start acutely or suddenly, and oftentimes will follow an infection so that
there was a lot of interest, and there has been for many, many years, looking
for the infectious cause or trigger of rheumatoid arthritis, and this has not
been found.
"We think [minocycline] works not because it's an antibiotic but because it
inhibits a specific protein which causes inflammation and cartilage decrease
in rheumatoid arthritis."
That's a backdrop to say that we do use an antibiotic for rheumatoid
arthritis, but not because it is an antibiotic that's killing bugs in our
system. It's because an antibiotic called minocycline, which is a
tetracycline derivative -- this is the antibiotic that all of our teenage
kids have taken for years for acne, so it's a pretty safe antibiotic -- has
been shown by a research group headed by Dr. James O'Dell at the University
of Nebraska to improve rheumatoid arthritis. We think it works not because
it's an antibiotic but because it inhibits a specific protein or enzyme,
which causes inflammation and cartilage degradation or decrease in rheumatoid
arthritis.
So, personally, I use minocycline in very early patients when I'm deciding
whether they should be on methotrexate or a biologic. I use it in patients
with very mild arthritis. But if the patients have more long-standing or
severe rheumatoid arthritis, I skip minocycline and either go to methotrexate
or a biologic.
D2E7 - a new biologic drug
Gina: I understand there are several new drugs in the pipeline currently.
D2E7, one of them -- maybe that's the first one out of the gate. How does
that work?
Dr. Schiff: Well, I think that Enbrel has started all of us thinking that
these cytokines, especially the TNF cytokine and the IL-1 cytokine, are
pivotal, let's say, bad actors in rheumatoid arthritis and need to be
inhibited or slowed down. And D2E7, which does not yet have a trade name --
its generic name is also a Star Wars, unpronounceable, adalimumab -- and this
blocks TNF somewhat like Remicade does, but it is fully human. Where Remicade
is part mouse, part human, this is a fully human protein that blocks TNF and
decreases it. And it's been shown, like Enbrel, to not only improve signs and
symptoms, so, pain, swelling and inflammation, but slows x-ray damage as
well, and this will be a choice in our biologic armamentarium for our
patients with RA. "New choices for patients who are not responding are
obviously very much wanted."
Gina: And would it replace the others? Would it be another one that you'd use
in combination?
Dr. Schiff: Well, I think that that is probably, Gina, one of the biggest
questions now. Really, with all of these new agents, how are we going to
order them? How are we going to choose? I think it's nice for our patients
with rheumatoid arthritis where we get, let's say, a 60 to 70 percent
response rate with Enbrel, a 50 to 60 percent response rate to methotrexate,
we still have many patients who don't respond. So, sometimes new choices for
patients who are not responding are obviously very much wanted.
Other drugs in development
Gina: What have you heard about something called CTLA4IG and LEA294?
Dr. Schiff: Right. These are compounds that are earlier in development, so
they don't have names. These two compounds that you mentioned are similar. At
a program called "Innovative Therapies" which the American College or
Rheumatology sponsors, data was presented for [them] and the data looks very
appealing in a very small study, and larger studies have been done, and we're
awaiting their results. The way to think of this product is that we don't
know the cause of rheumatoid arthritis, but whatever the cause is, it revs up
your immune system, and it tells your immune system to sort of turn on. It's
much like you have your foot on the gas pedal, and when you take it off the
gas pedal, the gas is still on, and you're going, and your immune system's
going about 90 miles an hours, and you just can't shut it off. The immune
system has multiple locks to really make sure our gas pedal isn't pushed to
the floor and stays there, and this is a secondary lock of the immune system,
which could be blocked and hopefully take our foot off the gas and slow the
autoimmune process in rheumatoid arthritis, and I'm looking forward to the
data that hopefully will come out of the next arthritis meeting.
Gina: Any other drugs in development that I haven't mentioned?
Dr. Schiff: Well, Gina, the good news is that we're in an era where the
biology of rheumatoid arthritis and the ability to then address these
biological problems and concerns is really exploding, and our ability to make
these products is exploding, so the development pipeline for our patients
with rheumatoid arthritis and for our clinical research units is really very
large and robust, and it would take us another, oh, three hours to discuss.
And that's good news for our patients.
How drugs are administered
Gina: And what are you most excited about? What do you see as being the
soonest things that are going to make a major difference? And I'm also
wondering about delivery methods.
Dr. Schiff: Yes. You're correct. I think that what we have now is much better
therapies, and obviously what I really hope for is the time that I can say
I'm going to go home and play golf or ride my bike because rheumatoid
arthritis has been cured. So, I think that as we unlock all of these immune
developments in our patients and we put together these biologics, maybe in
combination, I think this treatment for our patients is going to be very
successful.
A group at Fort Collins here in Colorado with the veterinary school actually
has looked at mice and rats and a combination of Enbrel-like medication and a
Kineret medication, and again blocking two of the cytokines that are primary
in rheumatoid arthritis, absolutely works fabulously well with these
four-legged animals. And again, as I said, that we in clinical trials are
trying to work that out for our RA patients.
Gina: Any chance of a biologic being a pill one of these days rather than an
injection? "My patients tell me that if they take two injections a week and
their arthritis and fatigue go away, the two injections are not a big
problem."
Dr. Schiff: Yes. Actually, we are looking at and in development -- we didn't
have time to discuss that -- but there are pills in development that would
hopefully block the TNF as one of the primary cytokines in rheumatoid
arthritis, and there's a pill in development that would block IL-1, the other
cytokine that I mentioned. Both Remicade, Enbrel and Kineret need to be given
as we use in medicine the word "parentally," meaning not by pill but by
injection. So, I agree it would be nice to take a pill versus an injection,
but I'll tell you, my patients tell me that if they take two injections a
week and their arthritis and fatigue go away and they can carry on their
activities of daily living, the two injections are not a big problem.
Final Thoughts
Gina: Any final thoughts for people who are dealing with rheumatoid arthritis
right now?
Dr. Schiff: I think that if you have rheumatoid arthritis, in the old days,
we were happy with a 20 percent or 25 percent improvement. Right now, we
really are shooting for 90-plus percent improvement in rheumatoid arthritis
if not almost complete improvement. If I see a patient with two or three
swollen joints, I'm not a happy rheumatology camper, and I think that we need
to be thinking about what else to do. I also think that people need to be
asking their doctors not just what their cholesterol is and their blood
pressure but also what their x-rays are doing in rheumatoid arthritis because
we need to be able to not only make you feel better but also stop if not slow
down the x-ray damage of RA.
Gina: It's time to wrap up this edition of ArthritisTalk, and Dr. Michael
Schiff, thank you so much. It's been very informative. And to our listeners,
if you'd like to join one of our discussions, or if you've got questions or
comments, please contact us at the Rheumatoid Arthritis Information Network.
We invite your input.
Dr. Schiff: Keep in touch with all the new programs on HealthTalk by signing
up for the free newsletter. Thank you all for joining us. I'm Dr. Michael
Schiff.
Gina: And I'm Gina Tuttle. If you've found this program helpful, please tell
a friend. From all of us at HealthTalk Interactive in Seattle, thank you for
joining us for ArthritisTalk. We wish you the best of health.
*******************************************
CARE BY A RHEUMATOLOGIST MEANS BETTER TREATMENT FOR MANY ARTHRITIS SUFFERERS
(American College of Rheumatology)
Greater access to a rheumatologist, a specialist who treats arthritis, may
mean better care and an earlier start of treatment for patients with
arthritis, according to research presented this week at the American College
of Rheumatology Annual Scientific Meeting in New Orleans, Louisiana.
A Canadian study tracked the treatment of 29,297 individuals with rheumatoid
arthritis over a five-year period to see how many were receiving
disease-modifying antirheumatic drugs (DMARDs) such as methotrexate -
considered the first line of treatment for newly diagnosed patients - and
whether patients seen by specialists were more likely to receive these drugs
than patients not seen by arthritis specialists. The researchers found that
9,412 (32%) patients were seen by a rheumatologist, and 80% of those
individuals had used a DMARD. The remainder of the study population was seen
by either an internist or a family practitioner, and in contrast, only 53% of
patients cared for by an internist and 14% of patients seen by a family
practitioner used a DMARD. DMARDs are considered the first line of therapy
because studies show that patients who receive these medications have less
joint damage, better function, and longer life expectancy than those who do
not. In addition, results showed that males and patients of lower
socioeconomic status were significantly less likely to be using DMARDs.
"It is important for people with rheumatoid arthritis, one of the most
disabling types of arthritis, to be treated with DMARDs," said Diane
Lacaille, MD, MHSc, Assistant Professor, University of British Columbia and
Research Scientist at the Arthritis Research Centre of Canada, and the lead
investigator in the study. "We know from this study that it is more likely to
happen if they are followed by a rheumatologist."
*******************************************************
I hope for those of you, who have not experienced HealthTalk.com, you found
this an interesting discussion with timely information.
Good Health to All
Jack Nicholas,
Newsletter Editor
Cornishpro@...
Issue 2002 11/15/02-24

Re Dilantin for pain relief

2008-07-21 23:56:34

Ron,
I was on Dilantin for two years in the early nineties following one isolated
epileptic type seizure. I cannot recall that it also helped the pain of PA and
I remember that I still had to resort to painkillers from time to time. No
neurological cause could be found for the seizure and after two years without
another one, I was weaned off Dilantin. Thankfully, I have not had any more
seizures.
Regards, Gordon

Re: [PsoriaticArthritis] psoriasis in ears

2008-07-21 13:19:47

In <ar143v+2p8r@eGroups.com
I use an earwax removal kit regularly. I've found that it reduces the
need for me to use hydrocortisone-based eardrops to next to nothing.

PA and fifth's disease

2008-07-21 11:28:02

I developed PA after being diagnosed with the childhoods disease "The Fifth's
Disease". Has anyone else had the same experience?
Janice

psoriasis in ears

2008-07-20 23:54:55

The psoriasis in my ears bothers me way more than anywhere else, and
I was wondering what you guys have done to get rid of it? The derm
said to use Cutivate in my ears, but I am very wary of using a
steriod there a lot, since it is such a delicate area. Would
dovonex be any safer? Once I read something about using an earwax
removal kit. Has anybosy tried that ever?
Thanks everyone!

zithromax

2008-07-20 20:58:31

<PRE

zithromax

2008-07-20 16:48:50

Yes Zithromax is Z-Pak, it works for me and often
knocks out infection fast. I am on MTX and my immune
system is low! I often get sick, and Z-pak seems to
be the only antibiotic that helps me. Sorry it
doesn't work for you! Perhaps there is something else
out there to help.
Chris

Re: A Real Pain in the Neck

2008-07-20 06:49:05

It's not my rheumy who's out of town. I live in a remote location
and I have to travel (about six hours) to see him. There are no
rheumys where I live :( That's why I have to travel.
cover for him while he or she is away. Check with his office to make
an appointment with his backup. Ron]

RE: Med. combo

2008-07-20 06:25:05

Keneret - (Maybe soon if insurance approves)
Remicade - double dose every 6 weeks (does not work)
MTX - .7 once a week (shot)
Azulfidine - 1500 mg daily
Folic Acid - 1 mg 6 days
Lucivorin - 5 mg 1 per week on day after MTX shot
Prednisone - 10 mg daily
Pain
Xanaflex - as needed for pain, daily
Loratab - as needed for pain
Demerol - as needed for pain
Flexiril - as needed for pain
Ultram - as needed for pain
Others
Lipitor - 10 mg daily (High Colesterol)
Cardizem - 130 mg daily (High Blood Pressure)
Dovenex - as needed
That is my short list. It was longer, but cut out a few of them.

Re: My experience with Kineret

2008-07-19 21:40:31

I have been on Kineret since the end of July. I was fine for the
first 8 or 10 days then the site reactions began on my legs. Boy were
they bad.
I do use the injector but it works for me. I had the reactions for
about 10 days in the beginning. I had a lady at work give me my
injections during the week and I was using the injector on weekends;
one leg for each day (Sat/Sun). Now my help has been let go due to a
lay-off so I have been injecting my legs myself all week long. Today
both are starting to have slight site reactions again.
The key is to rotate your sites everyday between your legs, arms,
butt and stomach if you can stand it. It is a must to have someone
help you with those hard to reach areas (arms especially).
As for how good Kineret works...I'm now waiting for Remicade
approval. Kineret isn't doing for my joints what we had hoped. I have
had new flare-ups over the last two months. And from what I
understand, if Remicade doesn't work then don't be too excited about
Enbrel. Remicade is a product of Enbrel. So don't get your hopes up
Scott. I hope it does work for you though. Maybe you'll have better
luck with Kineret than I am having.
Janine, OH

Re: zithromax

2008-07-19 17:27:11

Hey guys, can somebody anwer a kinda silly question?
Is Zithromax the popular, Z-Pak????? If so, I will have to inform my dr NOT to
give me that anymore--and would be a no wonder why it never helps!
LeAnn & Blossom
Heart Bandits American Eskimo Dog Rescue
Railroad Coordinator
www.heartbandits.com

Re:Sinus Infections and PA, etc.

2008-07-19 14:55:21

Now my turn to say hmmmmm....
I was born allergic to MOLD. Have been on allergy medications since I was a
small baby. When I was about five years old, we went rafting (my parents, my
aunt, uncle and my two cousins) in the rapids of the Colorado River. The raft
that my parents and I were in hit a rock. We ended up having to walk through
grass taller than me for like several miles to get back to Uncle Jim's van
(Uncle Jim was a doctor, by the way.) Anyway, let's cut to the chase here.
Uncle Jim gave me a penicillin shot, because the grass was full of ants, etc.
I just had bites everywhere. Result? HUGE RASH ALL OVER MY BODY reaction from
the penicillin. Have not used it since due to the allergic reaction, except for
once when I was very sick with a massive sinus infection/bronchitis 15 years
ago. The dr was a dr at the university I was attending and he did not "pay
attention" very closely to my files and gave me AMOXYCILLIN. By this time, I
already had had Psoriasis for five years. The flare up was unbelivable. ALL
OVER MY BODY. My close friend at the time, who is now my boyfriend, could not
BELIEVE his eyes.
So, in conclusion, I always make SURE doctors know to never give me an
antibiotic that is in the penicillin family.
I am finding all of this a very interesting topic. I have had sinus infections
ever since I was about 14. Mine go an interesting path--starts out as a cold,
then turns into a sinus infection, THEN goes into a respiratory infection--that
is IF not attacked immediately with antibiotics when it is a cold. I now only
get them twice a year, thank goodness.
I have not gotten a flu shot in years. I am almost afraid to, since I am now on
Hydrocortisone/APAP 7.50 mg prn every six hours in addition to the Naproxen on
the days that my PA is flaring. (on a normal day just the Naproxen--or
sometimes none at all) is fine. My PA seems to flare the most when it is cold,
damp and rainy, as well as when I am facing stress.
The PA is in my right wrist, left knee somewhere (not sure where in the knee),
my upper to middle back, and in my shoulders/neck. One finger on right hand at
tip by fingernail bed (on top) is at a permanent slight swell. This is the
finger that has the disfiguration. Also have PA in my feet. Toes becoming
disfigured, but so far, no damage anywhere. My PA is milder than my P. I am
the opposite!
Sorry so long...... just had a lot to say this time around.
LeAnn & Blossom
Heart Bandits American Eskimo Dog Rescue
Railroad Coordinator
www.heartbandits.com

Re: sulfasalazine questions

2008-07-19 01:13:47

I have been taking Sulfa for about 10 months with absolutley no
relief. I was originally prescribed MTX, but after some research and
the idea of having children I decided on Sulfa. MTX modifies your
DNA and you cannot take it while trying to conceive. My rheumy
incresed my dosage from 2 tabs twice daily to 3 tabs twice daily
about 5 weeks ago and still nothing. My advice is to completely skip
Sulfa and move to MTX or biologics because this disease can move
really fast and disable you in a short time span.
--- In PsoriaticArthritis@y..., "tantricmystery" <erinananda@h...

Re: [PsoriaticArthritis] re:Staphylococcus, Streptococcus, and a pet puppy

2008-07-18 21:09:29

In a message dated 11/14/02 1:27:44 AM Central Standard Time,
newjersey23@... writes:
I also recall that anti-biotic was either zithromax or
penicillin...
Hmmmmm Orin

Re: [PsoriaticArthritis] Weds biopsy

2008-07-18 11:06:37

Sherry,
I am so sorry to hear about that awful experience at the hospital, sounds
like you were primed and ready to go... mishandling your labs is inexcusable
Hospital employees forget that people's lives are wrapped up in their
paperwork snafus... I am so sorry that happened. Hope round two is the
charm:) Deborah

re:Staphylococcus, Streptococcus, and a pet puppy

2008-07-18 07:11:57

Another interesting note i'd like to make about the sinus
infection/anti-biotics connection...
before i developed PA, i had sinus infections every month.... and this
occured throughout my whole life... i was miserable with sinus
infections....After my last sinus infection which was more then 5 years
ago!, i developed PA immediately after... Researchers have also said many
years ago that people with chronic sinus infections have some sort of
fungus/bacteria that stays in their nasal passages even after the infection
is cleared up.. So the anti-biotic that i was on when i had my last sinus
infection probably turned that bacteria into a super one that is resistant
to all forms of therapy... The result = psoriatic arthritis... The only good
thing out of this is no more sinus infections...(almost 6 years now) Which
makes it even more interesting if you think about it.. (immune to sinus
infections) I also recall that anti-biotic was either zithromax or
penicillin...
[Moderator's note: Why don't you ask your rheumy to take a nasal swab and
perhaps blood test to see if you have any unhealthy bacteria in your system?
Ron]

My experience with Kineret

2008-07-18 03:48:47

I have been on Kineret since the beginning of 2002- almost a year now. In
the beginning I did have some irritation at the injection site. My "natural"
way of dealing with it was to apply Arnica gel to the skin before I injected
the Kineret. Then I left the Arnica on the skin afterwards for around a half
hour. If it got really itchy or red, I would apply an ice pack in addition .
Topical Benadryl cream can help too, I understand.
Another idea is that the ice could be applied for around 15 minutes before
the shot- that way the area would be good and numb when you do the shot too,
and it would reduce the irritation at the same time.
After three months- I had no trouble with irritation at all- zero. Mind
you, I never EVER used the injector- I always GENTLY inject the Kineret
myself. I believe that the injector is way too quick- almost violent you
might say- and would contribute to any irritation that you may be prone to.
Just my two cents....
Michelle
group founder

Re: Staphylococcus, Streptococcus, and a pet puppy

2008-07-17 22:56:24

More bacteria crazyness here :
http://abclocal.go.com/ktrk/news/111202_local_infection.html
I have a feeling this is just going to get worse in our world... With all
the doctors these days handing out anti-biotics like their growing on
trees.. What we are doing is turning these ordinary bacterias into
super-mutant type bacterias..
Think about....how many of us have had sinus infections all of the time
prior to developing PA... Its most likely the anti-biotics that made us sick
with PA.. Penicillin is made out of a mold for crying out loud.. So could we
sue our doctors now for prescribing anti-biotics? Wouldnt be surprised if it
started happening..
I know for a fact that my form of PA is bacteria/yeast related... Any type
of food makes my PA bad in everyway... The bacteria is feeding off the foods
i eat.... If i drink water and eat salad all day, i feel great..
Because doctors are dumb.. They dont care about what we have to say.. And
they certainly dont have the time to read our foolish articles that we print
up from the internet.. They'll just throw one of those "Dont believe what
you read on the internet" lines... The best thing is for us to do our own
detective work... If you try proving you know more then the doctor, they
will just look at you like your crazy..so whats the use? Maybe its just the
doctors here in jersey...or maybe their just so antsy to get to their next
patient..
mike

sulfasalazine questions

2008-07-17 20:10:34

how long after taking sulfa... does it start to work.
Been a month for me with no results except kidneys hurting

RE: [PsoriaticArthritis] Flu Shot

2008-07-17 08:30:31

It's also true that this year's bugs are particularly bad ones. The
likelihood of some flu like symptoms for anyone is quite good and if
your immune system is off, it's not too pleasant. Good decision to get
it though... if the shot can do this, imagine what the full blown
version would do.
Heather

Re: Lost message, New Poll, and Dovonex Scalp Solution

2008-07-17 04:55:12

Thanks Ron. That's good advice. Fortunately I saved a copy so didn't
have to retype it...

the

Re: [PsoriaticArthritis] This is probably simaler to what we all have :

2008-07-16 18:08:59

In a message dated 11/12/02 10:40:27 PM Central Standard Time,
newjersey23@... writes:
Unless you have a blatent infection there is not really any reason to test
for it. But if you just wanted to spend the money you would shove a qtip up
your nose and other places where you are likely to have asymptomatic
colonization with staph to collect a sample. You then grow cultures on petri
dishes and inspect under a microscope to identify the organism you want to
test. If and when you find the organism you wish to test you then collect
only that specie from the culture and set up another set of petri dishes to
isolate and breed that organism into a culture. Then you observe under a
microscope while you add the proper concentration of the antibiotic you are
testing for resistance and observe whether it kills or prevents
multiplication of the bacteria. This process could take weeks or months and
be quite expensive and 99.99 percent of the time would not reveal any
remarkably resistant strains. There is a good chance that even if resistant
strains did happen to be present in your system that these proceedures would
fail to identify it anyway. So unless you have an infected wound and a doctor
has treated it with standard antibiotic protocol and it still wont heal then
to order such a test would be way beyond reasonable.
I've had suspicions that there may be some unidentified pathogenic organism
responsible for the autoimmune symtoms related to psoriasis but to this point
havent found any scientific evidence to add any validity to that suspicion.
I hope that you will continue to study on it. There are new studies
published on the web every day and you will surely find some that I wont.
Orin
[Moderator's note: Hi Orin. It was my impression from reading the article that
plain old non-resistant staphylococcus aureus "[If it infects the blood]...can
quickly become fatal, particularly if the person has another medical condition."
Also, the article states that "Staph aureus is a common pathogen that infects
about 400,000 U.S. hospital patients a year" and "About 5 to 10 percent of
Michiganders have it and don't know it" so your figure of 99.99% should be more
like 90% to 95%. Finally, the method you describe for detecting bacteria and
antibiotic resistant bacteria is what you or I might do to detect them; however,
in recent years medical science has made great strides and with new DNA
techniques that can easily test for these things in a matter of minutes very
inexpensively. See for example http://www.gen-probe.com/pdfs/grampoz.pdf --Ron]

Re: [PsoriaticArthritis] FAR "OT": Mercury in your house

2008-07-16 13:54:02

Thanks for that moment of clarity on the topic :)

Staphylococcus, Streptococcus, and a pet puppy

2008-07-16 12:38:56

Newjersey,
Why don't you print out a copy of the article and take it to your
rheumy. Perhaps he/she can take a nose swab and have it tested. I'm
going to start Remicade soon and I definitely plan on doing that
myself. They test you for latent Tuberculosis prior to starting
Remicade, and it sounds like this is definitely something that should
be tested for as well.
Here are a couple of particular scary paragraphs from the article you
cited:
"... the new strain [of staphylococcus aureus] became totally
resistant to vancomycin, the longtime drug of last defense against
it."
"Staph aureus can live innocuously in the nose of a healthy person.
About 5 to 10 percent of Michiganders have it and don't know it, said
William Brown, a Wayne State University pathology professor. If it
infects the blood, however, it can quickly become fatal, PARTICULARLY
IF THE PERSON HAS ANOTHER MEDICAL CONDITION." (Capitalization mine)
Can you imagine the effects this bacteria would have on those of us
taking immune suppressing DMARDS who have staphylococcus aureus
living "innocuously in the nose" if we were to get a nose bleed for
some reason!?
On a somewhat related note, I ran across an article about the "Flesh
Eating" Streptococcus bacteria at:
http://www.krqe.com/Global/story.asp?s=1008108
"Doctors believe Chavez suffered a small cut or bug bite that was
then infected with a common bacteria called Streptococcus that
eventually killed him [four days later]."
...
"Doctors at UNM Hospital say the bacteria are more common in New
Mexico than elsewhere in the U.S. Doctors says they see a serious
case of the bacteria once every two weeks while hospitals in other
states diagnose the bacteria as infrequently as one a year."
...
"Doctors at UNM say these infections are more common than many people
believe. They say all that's needed to become infected is to have the
Strepp bacteria come into contact with an open cut or abrasion.
Doctors say the first signs of the bacteria are severe pain around
the cut as well as dizziness."
With all the bad news, I thought I'd try to find something good to
read about, so you might want to read this story of a pet Beagle that
was freed from a pipe through the efforts of three fire departments,
several police units, two animal control officers, and dozens of
volunteers after 36 hours of efforts. It was chronicled by local
television crews:
www.globe.com/dailyglobe2/316/metro/Beagle_freed_from_pipe_porcupines+
.shtml
-- Ron
--- In PsoriaticArthritis@y..., "Newjersey23" <newjersey23@h...

Re: Biopsy? Thanks

2008-07-16 02:05:49

Hi Sherry Lynn,
Some technicians are just not very skilled. I have had blood drawn
ever 2 weeks (for a non-PA) condition and I know who to do and who
not to do it. I have had some bad draws even then because someone
had a bad day. I usually tell them that I have an involuntary reflex
action when it is a bad poke and I might hurt them without wanting
to. They usually are more careful.
Just call and ask your doctor, the nurse, or the clinic performing
the procedure, if you can have a sedative.
May things go well.
Suzy
[Moderator's note: Reminds me of the time my orthopedic surgeon re-set a broken
bone in my hand. He did it in one quick jerk and I instantly and reflexively
raised my free arm with fist clenched and started to strike him in the nose
before I even realized what I was doing. Apparently he must have gotten that
reaction before, because he had already started to duck! ;-) They told me later
I had turned as white as a sheet and they were afraid I was going to pass out.
It was the most painful thing I've ever experienced, but fortunately it only
lasted a second or two. Ron]

Re: Microdose Therapy &amp; risks &amp; benefits of cortisone

2008-07-16 00:51:10

[Note to Moderator: I tried to post a slightly longer version of
this message last week but it didn't work for some reason, so here it
is again - thanks!]
Hi Charlene:
Thanks for pointing out the Microdose website. (www.microdose.com)
It looks like this therapy mainly combines the antibiotic protocol
using minocin (mincycline) with intermittent "pulses" of oral
cortisone (prednisone) to control flares. One of the quotes about
the theory on cortisone "pulses" (posted on the web site) states:
"John B. Irwin, MD, Medical Director, Inflammation Institute,
University of North Dakota (a one-year demonstration
clinic) "Microdose Therapy is a new system for treating arthritis
using tiny amounts of hydrocortisone, thus avoiding its side effects.
It is built upon the idea that the arthritic's body produces an
inadequate amount of hydrocortisone when the body should stop natural
inflammation, and hydrocortisone should be given only as needed to
terminate inflammation and not at other times."
The proponents of the Microdose therapy say that, because there is no
prolonged exposure to cortisone, there are none of the usual harmful
side effects. Although I wouldn't want to take prednisone
indefinitely, I'm somewhat interested in this therapy as a temporary
measure, as I have just started the antibiotic protocol. I
understand that, under the antibiotic protocol, it's acceptable to
occasionally use oral cortisone to control flares, especially in the
beginning (e.g. during a herx reaction), as the minocin can take up
to a year or more to take effect. The cortisone helps with the pain
while waiting to see if the antibiotic protocol will work.
Also, the Microdose theory parallels my own experience with cortisone
injections. My PA first manifested in my hands, as trigger fingers
(frozen, swollen fingers). As I had not yet been diagnosed with PA,
I was referred to a hand surgeon, who was able to "cure" each
swollen, frozen finger by injecting cortisone into the soft tissue
near the joints. Every 10 months or so another finger would swell &
freeze -- this has happened to 6 fingers so far. The injections were
almost miraculous with no side effects. I went from extreme pain &
immobility, to almost zero pain and total mobility in the injected
fingers. On occasion, two or three injections were necessary to cure
a finger, but most of the injected fingers have remained perfect
(some for over 3 years now) with no further injections necessary in
those spots.
As the PA progressed to my toes, (& hips, shoulders etc) the hand
surgeon injected the toes, with the same amazing result. However, he
referred me to a rhematologist as well, as he suspected some
underlying arthritis. The rheumy took 3 years to diagnose PA, and
has steadfastly refused to inject any cortisone. His explanation is
that there has been no bone destruction evident so far in my x-
rays. He also uses this excuse to support his reluctance to
prescribe the stronger DMARDS (as you might have guessed, I'm looking
for another rheumy). I don't think he takes pain seriously -- he
needs to see physical evidence in the bones. Meanwhile, I keep
returning to the hand surgeon for injections. The rheumy says he's
more "conservative" than the surgeon and keeps recomending pain
management techniques and orthotics. If it weren't for the surgeon's
injections I'd have been hobbling around with useless hands for the
last 3 years.
Anyway, my suspicion is that a short oral course of cortisone might
knock out the other flares (shoulders, hips) that can't be injected
with cortisone. The microdose theory supports that idea.
Any input on this would be appreciated!!
Sharon
--- In PsoriaticArthritis@y..., "Charlene Ahrens" <charahrens@e...

sedation for liver biopsy

2008-07-15 20:51:49

Sherry,
Here in Queensland, Australia, my gastroenterologist automatically included
intravenous sedation in the liver biopsy procedure. However, that requires the
addition of an anaesthitist to administer it through a cannula in the back of
the hand and monitor during the procedure and post-procedure monitoring which
adds to the cost of the procedure. Here it was all covered by government
medicare/private health insurance.
Regards, Gordon

Re: [PsoriaticArthritis] Kathleen from CA

2008-07-15 15:23:18

Hi Kathleen,
I am 35 and trying to get pregnant. I was Just
diagnosed in June and the arthritis started in May.
My husband and I have been trying to get preg for the
past 5 years so we have goen to a dr and tried several
different things. when I got the PA I threw
everything away for our next attempt. Then I decidid
I should ask the Dr. Now right now I am really good
and very lucky The PA is controlled with an NSAID and
that is working out really well for me. My OB is all
for me getting pregnant and said I can stay on the
meds I am taking until the third tri. I would suggest
that you talk to a fertility Dr and find out what you
can do. My Dr. says that the PA may go away when
preg. It also might get worse just something to think
about.
Good luck,
Charlie