For those who have Psoriatic Arthritis

It is so hard to get everything straight and to do things right. I read that
drinking a lot of water when you are taking mtx is good because it helps flush
out the liver and kidneys and not make it so toxic. So I'm not sure what the
right thing to do is. Guess this is another question for my appt. Tuesday.
The list keeps growing......
Robin
[Meghan's Note: Here's my advice: When in doubt, lean to the middle. Drink 8
glasses of water a day to keep the body functioning, eat good oils like fish and
olive oil to keep the body supplied with the healthy fats, eat your veggies and
fruits, don't overeat, etc, etc. Take a good supplemental mineral/vitamin since
our overmedicated bodies probably don't hang on to the good stuff long enough.
It's just my personal advice.]
Diana Costello <costello@...
On my response to "scared," I suggested she not consume massive amounts of
water. I did not mean quit drinking it altogether. I read a book last
spring (and of course I can't find it at the moment) that suggested my
low-fat diet over the last ten years and my drinking 1/2 gal a water a day
(Weight Watchers training) was partially responsible for my current pain.
The water washes the oils out of your body (exactly what WW claims) and your
joints end up w/o sufficient lubrication.
I talked about this book when I was reading it. It suggested no liquids
except whole milk while eating and waiting four hours after a meal (I wait
one) to drink. It also recommended 1 Tbl. cod liver oil mixed with two Tbl
fresh orange juice at bedtime.
I will go back in the archives if I can't find the name of the book. I know
this remedy might be a little extreme--but we are all looking for a
solution. This made a lot of sense to me.
Ks. Di
Please visit our Psoriatic Arthritis Group's informational web page at:
http://www.wpunj.edu/pa/ -- created and edited by list member Robert Harris
aka(raharris@...).
In August 2001 list member Jack Nicholas aka(Cornishpro@...) began to
conduct extensive research which he publishes as the Psoriatic Arthritic
Research Newsletter monthly in our emails and digest format. Many thanks to
Jack. Back issues of the newsletter are stored on our PA webpage.
Also remember that the list archives comprise a tremendous amount of information
(Over two years of messages and answers).Feel free to browse them at your
convenience.
Let's hear from some of you lurkers out there! If you have a comment or question
chances are there is a person who has been around a while who can help you out
with an educated guess for an answer. If not we can at least steer you in the
right direction with a good website to go to for the answers.
Blessings and Peace,
Michelle Atwood-Stack, Founder
Robert Alan Harris, Web & List Editor
Jack Nicholas, Newsletter Editor
Pat Bias, List Editor
Ron Dotson, List Editor
and many others who help moderate (thank you!)

Now that your hubby is off of the metho, I would be very careful about taking
any medication at all- and that would include tylenol. Most all medications
are metabolized through the liver and could keep the liver in trouble.
Believe it or not, it may be less toxic to the liver to take a narcotic pain
reliever for the severe headaches! and it sure sounds like he needs one!
When I got very sick from the metho and had elevated liver enzymes, it lasted
around a month. My "symptoms" were headaches and a flu-like severe muscle
aches all over my body. Once things cleared out of my system though, the
headaches and muscle aches went away. I did ask my doctor if they minded if
I took some milk thistle (it is known to cleanse the liver) and the
rheumatologist okayed it. I also drank a lot of extra fluids every day. I
hope this helps a little. Hope things clear up soon for him.
Michelle S.
group founder

Does anyone know about or remember reading an article
possibly in Forbes magazine about a drug very similar
to Enbrel but not as expensive? A doctor wrote how he
had contacted the drug company to get samples of the
other drug to do a trial but was told, between the
lines, that Enbrel was a big moneymaker and they
weren't interested in a trial of the other drug.
Please contact me privately about this.
Thanks.
Dianne, now in Maine, formerly in Boston
=====
My dog can lick anyone.

Hi Shane,
I have never heard of MTX helping OA. OA is not an inflammatory disease (nor is
it an autoimmune disordoer like PA and RA)... it is just basically arthritis due
to wear and tear of the joint. There are a very large % of people that have OA
once they get past 50. (and many professional athletes get it much earlier) It
is usually only in the friction joints... knees, ankles, neck, etc. Joints that
get injured during athletic activities or maybe even a wreck. I think a simple
x-ray would let you know if that's what's going on with your knee. By the way,
OA does not deform your joints like PA or RA... it just causes a lot of
discomfort and pain. (makes you feel stiff a lot) The glucosamine just helps
rebuild healthy cushion in the joints so you aren't rubbing bone on bone. Like
i said... I took it for a while for my PA just to see if it helped, but it
didn't. (and everything I have learned about it now explains why)
Go onto the Net and look up OA and PA. Learn the difference.. because there is
a HUGE difference.
Tiffany
In a message dated 12/12/2002 4:26:01 PM Eastern Standard Time,
robinanne53@... writes:
after about 6 weeks the glucosamine made it feel alot better. I wonder if mtx
helps OA as well. Does anyone know? The glucosamine hasn't helped anywhere
else,

Hi Linda,
I was diagnosed with PA in August 1994 in my right knee. During the summer of
1998 I had both double hip and double knee replacement surgeries within a
three month period. I suggest that for relief you should try Arava, Enbrel,
and/or Remicade.
I have used Arava and Remicade, which is better than Arava, but is more
expensive.
Enbrel is a self injecting substitute for Remicade, which is an IV treatment.
Now, at the age of 59, I am able to walk at home without assistance and I am
able to drive
my car short distances.
Sincerely,
Bill Reid in Washington, DC

Hi Meg,
Don't freak out about the A.N.A. being inconclusive or EVEN POSITIVE!!! I
actually had a positive ANA test last year, but my Rheum says that MANY people
who RA or PA have positive ANA tests. There are other blood tests that must be
done to prove that it is Lupus, and there have to be like 12 out of 15 symptoms
for the to classify it as Lupus along with the blood tests. (I don't remember
exacts, but it was something along those lines.) I was DEVASTATED when I
thought it might be Lupus, because I am only 28 and I want KIDS! Anyway, don't
worry about it yet. I was a definite positive on that test, and my Dr. swears
this is VERY normal.
Tiffany
In a message dated 12/12/2002 12:04:57 AM Eastern Standard Time,
tyson@... writes:

I experienced AWFUL headaches when I began Methotrexate... I was taking A LOT of
Tylenol for nearly 1 month.
Perhaps he is experiencing similar effects now- hopefully the headaches will
resolve soon.
He's so lucky to have a supportive, proactive partner- I'm sure it means a great
deal to him!
Kirsten

CONGRATULATIONS! Why to fight the Red tape!!

In our campaign for subsidized Enbrel and Remicade in Australia, we have
achieved a first, and important, goal. The Australian Pharmaceutical Benefits
Advisory Committee has recommended that Enbrel be listed on the Pharmaceutical
Benefits Scheme. Such a recommendation is almost binding on the government. We
are sure that Remicade will follow shortly.
This is only the first step, as it will only be available subsidized to severe
RA sufferers on a restricted basis. It can only be prescribed to people with
severe RA who have not responded to traditional therapies. Also, according to a
leading Australian newspaper, it will only be made available on a three month
trial basis and if the patient does not improve in that time, it may be
withdrawn from that patient.
All the efforts of us Arthritis Foundation of Australia advocates, our time, our
energy, pushing through our own discomforts for the benefit of other arthritis
sufferers, now coming to fruition. I am overwhelmed and choked with emotion.
We PAs here in Australia are now in with a chance. The fight goes on !!!!
Regards, Gordon
[Moderator's note: You only mentioned "RA". What about PA? Is Enbrel listed on
the Pharmaceutical Benefits Scheme for PA sufferers as well as for RA patients?
Ron]

I've used glucosamine for about a year with good results in my feet and
hands. I have OA as well as PA. The only caveat I would offer is that it
does raise your blood sugar so diabetics and pre-diabetics need to be aware
and compensate for it. I think it's well worth trying.

In a message dated 12/11/02 12:29:20 AM Pacific Standard Time,
cacombe@... writes:
Thanks Ron. I really appreciate that. I haven't decided what is worse, the
biopsy or going off the NSAIDs beforehand and afterward. I picked up a
prescription for Vicodin today because I have been hurting so bad. Maybe I
will finally get a little sleep tonight. Have felt like I'm sleeping on a
pile of rocks for the last 4 nights. Daytime hasn't been much better. I can't
take the Vicodin during the day because it makes me too sleepy, and I think
the docs I transcribe for would rather a coherent report to read, rather than
gobbly gook. LOL. Being off the NSAIDs for 2 weeks makes the biopsy look like
a cake walk.
Anyway, thanks again for the support.
Carol in Vancouver, Washington USA :0)

Shane, the only cautionary item that I am aware of is that a recent study
has indicated that either Glucosamine or Chondroitin may cause prostate
cancer to grow more rapidly. I believe that it was the Glucosamine. I'll
try and locate the source of the article this weekend as I am out of town.
It doesn't cause the cancer, but rather can nourish it along with the good
effects on joints and cartilidge. Male users over 50 should get a PSA test
more frequently if they are using Glucosamine or Chondroitin. On the
brighter side apparently both Boron and Selenium are supposed to fight
prostate cancer. Too bad we don't get much of them in our food that is
produced from overworked soil by the giant agribusinesses.
... Eric

conduct extensive research which he publishes as the Psoriatic Arthritic
Research Newsletter monthly in our emails and digest format. Many thanks to
Jack. Back issues of the newsletter are stored on our PA webpage.
information (Over two years of messages and answers).Feel free to browse
them at your convenience.
question chances are there is a person who has been around a while who can
help you out with an educated guess for an answer. If not we can at least
steer you in the right direction with a good website to go to for the
answers.

Hi - my name is Linda and I am 54. I live in Katy, TX and have had
psoriasis for about 8 years and psoriatic arthritis for at least 5, I
think. It started with just a little tiny spot on the back of my head
and now I have patches on legs, elbows, navel and crack. I used
Diprolene, Temnovate and Lidex which did no good at all except for
softening the plates. I used Avon anti-danduff shampoo which totally
eliminated the problems in my hair within one week. Nothing has
eliminated the others.
About 5 years ago I had swelling in my left thumb and my primary care
physician, thank God, sent me to a rheumatologist who immediately
diagnosed psoriatic arthritis and immediately prescribed a theraputic
wax hand soak, naproxen and water aerobics. I used the soak and
signed up for water aerobics and found the naproxen to be
ineffective. Then on to Feldene; innefective and stomach problems.
She explained she had to go through 2 DMARDS (insurance requirements)
to go on to the next step which was Prednisone. Thank God! By then,
the swelling and pain had gone on to my whole left and right hands
and I was having problems getting out of the car at work. I went on
short days and soaked in hot baths in the morning. Fatigue set in as
well as fanthom pain in my shoulders and hips.
She then informed me she had to have surgery on her feet for her
arthritis and that she was quitting because she was sick of the red
tape the insurance companies required to help her patients when they
refused to help those who could not even walk, and forwarded me on to
a new rheumatologist.
He immediately told me I had to get off the Prednisone and reduced me
down to nil! Boy do I miss that Pred! I have occasionally had to
have shots into my elbows and feet. I now take 10 mg methotrexate per
week, Celebrex, Enbrel and Neurontin. I am going to try 15 mg meth
because I am having problems controlling my psoriasis, but don't
experience too much pain and stiffness.
My biggest problem is the fatigue. I lost my job of 12 years and my
husband was layed off about the same time. He doesn't understand
about the fatigue and continually berates me for not being in
constant motion while we are both unemployed because he doesn't have
any of the problems I have in getting motivated. I just want to lay
on the couch. Do any of you have the same problems?
The other problem is having to pay the COBRA insurance which is $575
per month.
Thanks for listening.
Linda J

Maureen wrote:
<snip
Interesting point about the P possibly making us more vulnerable to
infection. I don't know if it does, but it brings to mind an anecdote
about my own experience:
I had a hip resurfaced (sort of like a replacement but not nearly as
invasive to the femur) about 3 years ago. I thought it was probably time
for me to stop taking the prophylactic antibiotics (amoxycillin) prior
to routine dental visits and called the ortho. surgeon's office just to
be sure. I was quite surprised to find out that people with rheumatoid
arthritis-type problems are advised to _keep taking_ those
pre-dentist-visit antibiotics because the rheumatoid disorders make us
more vulnerable to infection than "normal" people.
I don't know why that is, and I haven't had time to research it, but it
kind of made me go "aha" mentally .....
--Louise

Great stuff - get on it as soon as possible. lj

I have been on Enbrel for a year and a half. It has
been a miracle drug for me after trying lots of other
drugs including MTX and antibiotics at different
times. It has given me my hands back. I have been
able to reduce the dose from 2 injections a week to
one injection every 2 weeks. If I would have started
Enbrel earlier I would not have the residual joint
damage I sustained while on other drugs, especially
antibiotics. I think everyone with PA should try
Enbrel first, not last, if they have the opportunity.
RGDS R.E.
--- "Jane <j_x_healey@...

In a message dated 12/11/02 3:16:54 AM Central Standard Time,
sjssjs00@... writes:
I had mixed the contents of flax oil capsules with cottage cheese on advice
from a person who had really studied up on omega 3 oils. I couldnt stand to
eat it that way because of the taste but I never had any problems with up to
3 capsules at a time taken with and without food. I'm really surprized that
such small quantities of those oils would upset your stomach. I do believe
that increasing omega 3 oils can have a postive effect on PA but in my case
it didnt make any noticable improvement to the skin. I use a combination of
fish and flax capsules.
I dont have any knowledge of soya yogurt but I guess you would have noticed
if it was a particular combination of oil/food that was causing the problem?
What particular source seed was the oil made from and what brand?
How long after beginning to take that dose of oil before the first pain
began?
Was the pain full intensity when it began or did it increase over time?
Was the pain steady or intermittent?
Any other digestive complaints such as indegestion, gas, bloating, cramps,
diarrhea, constipation?
Any feelings of anxiety or nervousness?
Note to moderator if this is too much clutter for the group I wont mind you
forwarding this directly to her so we can discuss this off (whats the word?),
uh somewhere else will fit ha ha Orin

Hi, I take 20mg MTX a week and up to 50mg of vioxx a day (depending on how my
joints are), I take the vioxx in the morning and in the evening. Mostly because
my joints are at their worst in the morning (and not too bad during the day) I
just take the vioxx at night before bed 25mg of it. I have been on MTX (2 years)
and vioxx about 8 months. I have tried various other anti-inflammatories but
vioxx seems to be working well for me at the moment. My GP (and rheumy
consultant) did say only to take the 50mg of vioxx when my joints were at their
worst and not take the higher dose for too long. So mainly I have about 25mg
maximum per day.
Cathy (in the UK)

I was on Enbrel for around six months. Unfortunately, it stopped working
for me, and I had to go on to other drugs. I went on to Remicade next at
that point if I recall. I was using Arava and Enbrel at the same time too,
mind you, and it still wasn't enough to hold me!
Very disappointing! It is not a miracle cure for everyone!
Michelle,
group founder

Hi all, does anyone know if taking vioxx while taking MTX is safe or not?
Ghaida,,,
[Moderator's note: Don't know about Vioxx, but my rheumatologist prescribed
Naproxen along with MTX for me, and I believe many others also take NSAIDS while
on MTX. In the final analysis however; to the best of my knowledge none of us on
this forum are medical doctors, so you should always check with your own
rheumatologist before changing your medications - besides, only your doctor can
prescribe them anyhow (at least in the USA). Ron]

Hi Orin,
I bought a cold pressed organic variety that I was told is a higher
quality oil. I kept it refrigerated and it was not passed the
expiry date. I took between one quarter and one half of a teaspoon,
mixed with juice or soya yogurt and the stomach aches started after
a few days. I also had the same kind of stomach ache when I tried
to take primrose oil capsules last year (sharp pains in the stomach,
lasting a day or so). The pains stopped when I stopped taking the
oil. I think I must have some kind of sensitivity to oils...
Sharon

Hi everyone,
I know I don't post very much, but I do faithfully read every single e-mail
that I get. I just wanted to let you guys know that I am scheduled to undergo
a liver biopsy this Friday, 12/13/02. This will be a blind biopsy without
ultrasound. I was to wait until an ultrasound tech was available, I would not
be able to get the biopsy done until the end of January 2003. I don't want to
wait that long. I just want to get it done and over with. My GI doc is really
nice and has been very thorough in explaining everything to me and what to
expect, so I feel reassured.
I have been on methotrexate for 3 years now (20 mg a week orally since
February), and this past August my liver enzymes started to elevate. I have
had multiple blood tests since then and now, and the enzymes haven't come
down. The methotrexate has also been causing me to feel more ill after I have
taken it. At one point about 2 months ago, I had taken the MTX on saturday
morning (usually take it on Friday night, but forgot to) along with breakfast
and my usual stomach medicine. I then went to work. About halfway through the
day I developed uncontrollable throwing up. Ended up in the ER and had to be
given Phenergan to get it to stop. Fortunately, I work at a hospital, so I
was right there, and didn't have to drive anywhere.
I will probably either be starting Imuran or Remicade in January, and I have
been put on the list for Enbrel.
I will let everyone know how the liver biopsy procedure goes. I know other
people have been asking questions about it.
I can't tell you how lucky I feel to have found this group. I read all the
e-mails, and I really feel close to all of you. And Gordon, I'm glad you
decided to stay with the group. I always read you e-mails with much pleasure.
Take Care,
Carol in Vancouver, Washinton, USA
[Moderator's note: Best of luck with the liver biopsy Carol. Ron]

Tracy,
Thank you so much for responding. I'm really getting worried about my Mom,
and she's been putting off calling the doctor because she thinks prednisone
is causing the problem. I am going to tell her the first thing in the
morning to call her doctor. Thank you again, you have no idea how much I
appreciate your response.
Cheryl

As a speech-language pathologist- for a long time I thought my TMJ
was just an occupational hazard- but then the pain spread to other
joint and... well here I am.
You are absolutely right... you CAN have arthritis in your jaw! I
don't know why doctors are so surprised... we've obviously figured
out this rather blatant correlation!
Also- in addition to the bite splint, there are some exercises that
you can do and warm-ups that are helpful (just as there are for the
rest of our bodies). If the splint is not helpful enough for you- a
speech language pathologist can often help in this regard. (I
personally haven't taken that next step (my bad) so I can't give you
specifics).
Here's another interesting tidbit... the most common cause of TMJ...
fellatio.
It's TOTALLY true- and hopefully gave you a giggle!
Good Luck!
Kirsten

In a message dated 12/10/02 1:04:35 PM Central Standard Time,
sjssjs00@... writes:
Stomach aches from Omega 3? What form are you taking it in and how much at a
time? Orin

Ask about Neurontin. It relly seems to work for things
like Fibromyalgia and TMJ. R.E.
--- "meghan_e <meghan@...

I too have jaw problems. They say it is TMJ, but could
be from the PA.
Good luck,
Scott in Atlanta, GA
--- "markncharn <markncharn@...

Hello,
Welcome to the group! First thing is to make sure and see a
rheumatologist and next a dentist. Both are important for addressing
jaw pain and arthritis.
I had horrendous jaw pain when I was first diagnosed with arthritis.
Got the same response "jaw pain and arthritis?!" I still believe it
was related. I saw a orthrodontist who specializes in TMD
(tempomandibular joint disorder/disease). He made me a bite splint
and eventually my jaw calmed down. I've been on more and more
aggressive arthritis drugs and my jaw is much less of an issue. Of
course, the other joints are starting to do better as well.
Jaw pain can come from any place including arthritis, but often is
from grinding or clenching. If you grind at night, a splint is almost
essential. Even if the jaw pain is being caused from the arthritis,
odds are a splint will still help in the same way splints help for
ankles, wrists and knees. They help keep the joint protected.
http://www.health-sciences.ubc.ca/whiplash.bc/module3/mod3_3.html
http://www.aaop.org/TMD/info_factors.htm
(you might find someone near you throught the AAOP site)
Also, some doctors might take an x-ray, but most won't bother. My doc
did and it showed medium joint deterioration. This guy is well-
established in the dental/orthodontia community, so I believe him. I
think it's important to get the jaw problems under control since it
such a vital joint.
Heat to the neck will help relax the muscles around the jaw. A bite
splint will probably be helpful. And finally, make sure your
rheumatologist is working with you to calm down the arthritis.
Best wishes,
Meghan

In a message dated 12/08/2002 9:00:33 PM Eastern Standard Time,
troycheryl@... writes:
Cherly - I know prednisone is hard on the stomach, but I never heard of
anyone having the stomach and bowel problems while decreasing the pred. She
should probably contact her doctor.
Tracy

In a message dated 12/10/2002 3:13:02 AM Eastern Standard Time,
Lotsoshoes@... writes:
Tammy - first of all, why would you feel funny asking for a flu shot? Or is
it a needle phobia thing? and secondly, if you are on a DMARD (Methotrexate,
enbrel, etc.) you NEED a flu shot to protect you since your immunities have
been decreased by the DMARD.
Tracy

hi being new i'm still wadding thru,dose anyone know how the chat
section works?"still learning"
ALSO has anyone else got problems with their jaw&mouth each time i
mention it drs. look dumbfounded and just say"jaw!"
thanks

I would write to the rheumatic mailing list for help--I have not started
antibiotics myself, but apparently many people have been through similar
situations and have had success by making changes (diet, but especially
changing antibiotic). AP does not work for everybody, but if it worked for
you once, it may be worth insisting, and I truly believe, based on 20 years
of PA, that taking medicine is not enough, the diet, for example, must be
_excellent_. You of course have to be very careful to avoid damage in the
meantime--perhaps rather than fighting with your rheumy, who is only trying
to protect your joints as best he can, you should get yourself to a an AP
doctor with a lot of experience if you want to continue that route.
By the way, antibody testing (not PCR testing) for mycoplasma apparently
works better _after_ you have been taking antibiotics. You might want to
try that.
The
That may have been a huge stress in itself, both physically and mentally.
Getting tested for yeast may be worthwhile as well.
For those about to start medicines:
I returned from non-functional to functional and nearly pain-free this year
with only diet and lifestyle changes. I'm certainly not saying it will be
enough for everyone, nor that anyone should risk damage by avoiding
treatment (!!!), but for a limited period of time it is certainly worth a
very serious try! If I had started sulfasalazine or AP, I would have given
those the credit, my improvement was so dramatic. I follow Dr. Mercol's
guidelines VERY loosely. (low carbs, _no_ sugar, lots of veggies and
protein, omega 3's, daily probiotics, lots of water, NO JUNK.) If you find
it very hard to give up sugar you should be suspicious of a yeast
infection. (That goes for the woman who drinks soda all day too:-))! Also,
diet soda will mess up a lot of systems.)
The diet is not that easy at first, but it is a piece of cake ;-) when I
think of the possible alternatives.
I am very sorry I do not have more time to follow this list--though maybe I
shouldn't be, because it would mean that I could not work anymore;-)).
I hope to design a poll about antibiotics together with Ron D. What do you
say, Ron?
BTW, I think Meghan's note is quite sensibile, but I would add the other
alternative of seeking out a qualified AP doctor, and possibly getting or
staying on some other medication while waiting for it to kick in, to
prevent damage. (cortisone?)
I suppose it also depends on whether one subscribes to the idea that germs
are being fought or whether you just think of AP as another immunomodulator
(as most rheumies hold) for a mixed up immune system. Personally the
mycoplasma theory makes more sense to me--my theory is that the psoriasis
(internal?) makes us more vulnerable to infection, just as I used to get
herpes infections in the eyes apparently because of the P. (the eye doc
told me the healed part kept sloughing off...)
My best wishes to you all,
Maureen in Italy
And hang in there, Gordon--we are all thinking of you!

I just had an appointment with my primary doctor. I finally got up
the nerve to get a flu shot, but unfortunately was running a slight
temp, so they would not administer it.
I expected to be seen by "THE" doctor, but was seen by the Physicians
Assistant instead. I previously avoided her, thinking my history was
too complicated for her to follow. What I found was someone who
wasn't in a hurry to get in and out, and really listened to me.
On my last vist to my rheumy, he took me off of Ambien when I
complained that they were not as effective anymore and couldn't
sleep. I was hoping we could find something better. He was worried
about addiction and said to try benadryl instead.
I explained to the Physicians Assistant his concerns, and that I was
taking 4 benadryl a night and still not sleeping. Add in the stress
of being on disability leave (which ends in early March), up coming
surgery in end of February, worrying about keeping a roof over my
head, and the cost of Christmas, I now have the neighbors from He##
moved in upstairs with their loud stereo late at night and early in
the morning--my nerves are frayed.
She put me on Paxil and back on the Ambien. She hopes that together
they should help me get some rest, and we may even be able to cut
back the Ambien, but she is less worried about addiction to ambien
with all of this added stress. It hasn't been a week and I'm getting
a bit of rest. I'll be campaigning to the landlord to keep the noise
down. I just feel blessed right now to have found a doc to listen to
the "emotional side" of this illness.
Thanks all for listening.
Tammy in Phila
[Moderator's note: Tammy, I was in the same situation as you with regard to the
Ambien - it's not addictive, it just looses its effectiveness. Even the
manufacturer says it shouldn't be taken for more than 7 to 10 days. What works
great for me with no lack of effectiveness or need for larger doses over time is
Klonopin (clonazepam). A milligram or two of it along with some melatonin and
benadryl a couple of hours before bedtime almost always assures a good nights
sleep. Some people swear by Flexeril, but it just doesn't do anything at all for
me. Might be worth a try for you though. Ron]

Thank you so much. I have been with this so long..these stories give me
nightmares. If I can be of any use please contact me. I am 57 years old.
Diagnosed with psoriasis at the age of 14 (tar treatments at that time) PA
at the age of 29. In a small town, but I think my Dermo,Internist and
Rheumy have the new stuff
lk
[Moderator's note: You're very welcome lk. If it's Ok with Michelle, perhaps
Jack Nicholas could send his Newsletter out as a "Special Notice" so that folks
like yourself would have a way of receiving the Newsletter without all the daily
postings(?) Michelle, Jack,... if you're reading this, how say you? Ron]

Sharon,
New studies are showing that a low dose (5 to 10 mgs) of Prednisone is much
more affective than the traditional high to low dose regiment. I do hope
that you continue to feel as well as ever. Just don't push you limits
because you are feeling well. Remember to still take some down time for you
and be gentle with your self and hopefully this time with little pain and
suffering will stick around for you! Enjoy the holidays and also, thanks for
the info on antibiotic treatment. Testimonials are a great way for all of us
to learn new ways of dealing with this lousy condition!
Christina
[Moderator's note: I would like to recommend that whenever anyone asserts
something to be true that's not already obvious to all of us, that they try to
post a link or some other source (book, magazine, television program?) for the
information, or at the very least enough information so that we might stand a
chance of finding the information on our own. No offense is meant to you
Christina, but I can't very well tell my rheumy that I want low dose Prednisone
treatment instead of a regular Medrol dose pack because "New studies are
showing..." The very first thing she's going to ask is: What new studies? Ron]

Please unsubscribe me from this service. I would not mind a newsletter once in
a while, but 30 to 50 e-mails each day is too much. Have had this mess for 43
years and don't need this much info. I appreciate what
you are doing for the new people and us old-timers need to know all the new
stuff. Dealing with it on my own and I guess this is just too much for me right
now. I haven't written a testimonial but knew things are happening to me after
all these years . Been there and done that with MTX and UV lately. Got that
taken away in May because of elevated Liver Enzymes. Been taking it for at
least 30 years. My skin is a mess but I feel so much better. MTX always made
me sick. Trying some holistic things and essential oils. It is
interesting.....
lk

I want to thank all who were kind enough to respond regarding my
daughters illness. I will keep everyone posted as to her progress
and again any input is greatly appreciated.

Debra,
What part of Texas. I am from Texas City (outside of Houston) and have
relatives all over the state. If I were you I would ask for the Bextra. I
am a big fan of it. It has been the only NSAID that I have used that helped
me lot with the pain and had I experienced very little if no side effects at
all! Take care!
Christina

What ever it takes, GET TO A Rheumatologist!
He will be the only one who can help you. He will,
hopefully, do an aggressive treatment for you.
I hope you get there soon.
Good Luck,
Scott in Atlanta, GA
--- "celticangyl <blueyedangyl@...

Hi all,
I was wondering if anyone else on remicade is experiencing this. I have no pain
or inflammation between treatments, but around two or three weeks before my next
infusion, I experience overwhelming fatigue. I feel like all I do outside of
work is sleep. My job is very demanding and many nights I don't get out of work
until eight or bring work home and work through the evening there. The rest of
the time, this is no problem, but right now I'm always exhausted. Getting
everything together for the upcoming holiday season is just compounding it.
Does anyone else experience this. My rheumy doesn't seem to feel this is enough
to move my infusions closer together and, although my boss is amazing, it's
difficult to make someone understand the difference between being tired and this
type of fatigue.
Any suggestions on how to improve energy, deal with work, etc. would be greatly
appreciated.
Jenn
[Meghan's Note: I do experience a drop in the efficacy of Remicade about
half way through the interval. The pain and achiness start to come back
intermittently. Usually at about 4 weeks. Last time my rheumy increased the
dosage which helped a bit, but not enough. Because of that I just started
Enbrel in the hopes that it will be more continuous. I am surprised the
doctor doesn't feel fatigue is enough of a symptom. You should make a point
to ask what the doctor thinks about the fatigue, as it is a very typical
problem with arthritis.]

Hi,
My name is Debra and I am from Texas. I was diagnosed with Psoriatic
Arthritis about a month ago. My Rheumy put me on Sulfasalazine.
After about 3 weeks of taking 4 pills a day, I saw a little
improvement in my pain. I had to go off the meds for a surgery and
while I was off of it, my surgeon had me on Toradol for 10 days to
help reduce the swelling in the abdomen. I had NO arthritis pain at
all. As soon as I ran out of the Toradol, my pain came back and came
back hard. My shoulders, neck and back hurt so badly that I am
having trouble functioning. I started taking the Sulfasalazine again
about a week ago, but I am still hurting. Do you think it would be a
good idea to ask my Rheumy to prescribe Bextra to go along with the
Sulfasalazine or is mixing DMARDS with NSAIDS a bad idea?
I was taking Bextra before my primary care physician sent me to a
rheumy doctor because of liver tests. The Bextra worked pretty well.
What do you guys think?
Debra....in awful pain
[Meghan's Note: Welcome to the group Debra. I hope you'll stick around as
this group has terrific support and good people. It is actually typical
to be on a DMARD and an NSAID, unless it is contrindicated for a
particular person for some reason. You should usually give a new DMARD at
least 3 months to work before giving up on a treatment. The interim is
definitely hard, but sometimes it just takes time for the medication to
calm the body down.
Arthritis is not simple disease and there are many misconceptions about
it. Public conception is that an NSAID is all it takes to calm down
arthritis. In addition, there is the perception that arthritis only
affects the elderly, which is simply not true. For some reason, the
concept of what an inflammatory arthritis is capable of eludes the
public. Anyway, I hope you find some relief soon!]
Anyway,
]

Melissa-
GET THEE TO A RHEUMY!! Here's a tip. Your sed rate is elevated- so
use that to your advantage. Have your PCP call local rheumy's to get
you in- be sure to tell them that your sed rate is elevated, that
worked for me. If your PCP refuses- either get a new PCP- or call
rheumy offices yourself pretending to be with your PCP (I work in a
hospital and we get calls from PCP's all the time and there's no
special "code" or anything!)
Remember- if you're only treating pain- you're fighting an uphill
battle- this is a DISEASE that must be treated. I know what you mean
about the lack of sympathy and understanding. Even though my family
and loved ones have been pretty great... I was still "relieved" when
my knees swelled up and the MD aspirated 300cc's of fluid out of them
because it was something TANGIBLE, it was PROOF that I was in
exceptional pain. I don't think others realize how brave and
courageous we have to be just to get out of bed in the morning.
Here's a thought, put a sharp rock in your partners shoe- right under
the heel- and then have him do the grocery shopping, cleaning,
toddler chasing, get up and down to go the bathroom 100 times because
of all the water, etc., etc. ;) Okay, that was mean... but I really
don't think others have any idea.
This is getting really long and preachy... but I'll leave you with
one more thought... God loves you and that's alot!
Hold on to the fact that as much as you love your little one- a force
mightier than your pain loves you- and is hurting with you.
Things might not be better tomorrow or the next day- but they WILL be
better! You WILL get the help you need- and probably learn some
really great stuff along the way that will make you, and your child,
better people for it.
Kirsten

Hi! I'm very sorry to hear you are having a bad time right now!
Chronic pain causes depression, I went through that myself. My
rheumy told me that it will only amplify the pain. I would not take
anti-depressants as I did not feel that had anything to do with my
pain, if I had it to do over I would have! My pain also interfeard
with getting restful sleep and only served to make the whole cycle
more visious. I thought that one was off too but it wasn't. You have
to go to a rheumy. I know you said your work hours doesn't work
well, but you could end up off work if it carries on, I ended up on
medical leave for two months and having to change jobs as they would
not release me. My job was a very physical job so don't let that
scare you. I would make an appointment towards the end of your work
day(1st shift) or at the very beginning of the day (2nd shift) that
way you don't miss the entire day's pay and your employer should be
satisfied. By the way I don't drink very much water either, mostly
soda all day every day. I have cut back on the soda as I am pregnant
and I've noticed no difference. Try to be patient with your partner,
he probably don't fully understand what's happening to you. My
husband was not very supportive at first, he just did not get it.
Also I think part of it was that he couldn't fix it so it only
served to frustrate him more. Explain to him that your immune system
is attacking you, and under good circumstances that will make you
feel like you have the flu, tired& achey. With it attacking your
joints it gives you alot of pain to go along with it. You sound like
you, I did a few months ago. Don't be scared, try to focus on
getting yourself the best possible care. When I finally got to a
rheumy I did not believe anything would help, but was desparate
enough to try anything. I had been taking bextra ( same drug group
as vioxx)and had a steriod shot with little relief. He doubled my
dose of that and added flexeril to help with muscle pain and make me
sleep more sound. I did not think that sleeping was my problem other
than that was all I wanted to do. It worked. I spent the better part
of 3 days sleeping. My pain started to improve, as my pain improved
so did my mood, as both improved I started feeling much better. This
may not work for you, but I can tell you there is more to treating
this than vioxx and it can get better! I hope thing get better for
you soon!Sorry so long!
--Merribeth

hi all especilly melissa;
i'm only new to group so hope you don't mind my input, i couldn't believe how
reading your messages felt like looking in the mirror,y es even your's
melissa,oh the degrees of lowness,and isolation, those closest to us feel so far
away,pain is ours alone.but melissa,please believe you will find strength, from
places you don't know now,i have,only a week ago i was feeling very much the
same ,and getting the same partner responses,but then days passed and things
improved,i still have the pain but ,i don't know maybe the sun shone or i saw a
bird or something,
rest,sleep then get up.
i found this group when i got up,
markncharn kennel's markncharn@...

Kelly, this is a scary situation in our lives, too. Right now my husband's
employer gives us Blue Cross/Blue Shield and when he retires early to start his
own consulting business we were nervous about healthcare. My husband is on
Enbrel and we are fortunate now to pay only a $5 copay for a three month supply.
He was recently diagnosed with a malignancy so we have alot of strikes against
us. We could only find that keeping BC/BS will be the only route to go as they
will take it out of his pension which will be approximately $1500/month for the
same coverage.
It's scary!
Karen in NJ
What are the rest of you experiencing with regards to this?
Kelly

Michelle -
I am sure I speak for others on the list when I say a large and heartfelt
thanks for your work in starting and managing the list, despite the
difficulties you have faced. It is unimaginable to me,and I appreciate
your dedication enormously.
Is there a reason you're not on Enbrel??
Clarke Dixon-Moses

Thanks for that input Christina. I guess all of the DMARDs have
pretty frightening side effects when you really look into them. But
the disease progression can be even worse, so we accept the risks...
You say you're looking for more looking for more research showing the
benefits of the antibiotic treatments for PA as you are "weary of
taking any antibiotics due to so many infections becoming
resistant." I think this is a very legitimate use of antibiotics.
I looked for quite a while before starting starting on minocycline
and found most studies showing these benefits were geared towards RA,
not PA. However, I decided to try it anyway, given the similarities
between the two diseases -- in terms of treatments and because of the
large numbers of individual testimonials on various sites from people
with PA who have had great success using minocycline.
Meanwhile I've decided to stay on a very low dose of prednisone a
while longer, as well as ibuprofen & minocycline. For the last few
days I've really been tapering off of the prednisone. I started at
20 mg for 5 days, then 15 mgs for 5 days, then 2 mgs for 2 days. The
last 3 days I've only been taking between 2.5 mgs and 3.75 mgs per
day and feel better than ever. In fact I haven't felt this good in 4
years. I'm still in shock about feeling this good, given the amount
of pain I was in only a few weeks ago. My mobility is completely
back. I can walk without hobbling, can brush my hair with my
dominant hand and can sleep through the night with no pain at all.
My extreme morning stiffness and evening stiffness are 98% gone!
Does anyone know if it's normal to have continued improvement even
when tapering off prednisone? I think it's too early to attribute
the improvement to the minocycline (I've only been on minocycline for
approx 2 months).
Sharon

Welcome! I was just in your city this summer and loved it out there!
I am pregnant and was only recently diagnosed with PA. I was on
bextra, flexeril, and had steriod shots just prior to getting
pregnant, they removed me from all meds as soon as I had pos. preg.
test. After one month of hell I'm doing pretty good. I still have
some pain (the last couple of days) but most days its not too bad. I
am almost three months. I knew right away (baby #4) so I did not
experience any problems from the bextra. I have more than just PA so
I think that this is as good as it gets as far as pain goes. The
psoriasis has not changed either way. The doctor does antisipate any
problems so thats where I'm at right now. Good luck and I hope
things go well for you!
--Merribeth

I'm so sorry to hear your daughter is having such a bad time. I am
new to this disease so my knowledge is limited. I've never taken MTX
but you have come to the right place as there are many here that do.
I have had large outbreak of psoriasis, not as bad as your daughter,
mine was around 80% at one point, so I will share what I have
learned from my dermy. Did they do a tar wrap on her? That's what my
dermy wanted but insurance would not allow me to be hospitalized to
do that unless I 90% and infected. Also I visited him right after
the PA diagnosis and he said to stay away from prednisone, as far as
the psoriasis goes, because it causes the psoriasis to rebound
horribly, and I didn't need any more trouble. I wish had more advise
to give and I hope your daughter gets some relief soon.
God Bless,
Merribeth

Hi Sandy,
I'm very sorry to hear your daughter is having such a
bad flare. First of all, is she seeing a
rhuematologist or just the Derm? Based on the pain
you've described she's in, needing a walker to get
around, she has to see a rhuemy. The methotrexate
typically takes between 4- 6 weeks to kick in and
sometimes longer. Some people also don't respond to
Metho and they need to be on something else. Based on
her severity with both P and Pa, Enbrel or Remicade
are the best to try if there is any way possible at
all to get her approved. In the mean time, if the
prednisone is not helping with the pain and its at the
point where you think she can't hold on, then she
should be on percocet, vicodin or some other
comparable (or stronger) narcotic analgesic, at least
initially to get the severe pain under control. Then
there's a multitude of other non-narcotic painkillers
to try, but the best thing to do now is get her to a
rheumatologist. I wish you both all the best.
Mike
In t--- "sandybeckwith <sandybeckwith@...

Hello,
It's been a really long time since I posted here.. wallowing in self
pity I'm sure. I am hurting more and more each day and I'm so
frightened. I am taking 50 mg of vioxx a day and my pcp is at the
end of his rope with meds he feels comfy prescribing, and finding a
rheumy is hard due to my work hours etc. I know it's getting worse
because on baseline blood tests nothing came up, now my sed rate and
wbc count is elevated. All my partner says is "drink more water, and
move around" he blames me for my pain and can't understand why my
vioxx and sleeping the pain off is my only option at times. He's
right about my not drinking water, I don't drink water at all... soda
all day actually. I can't even take care of my toddler today. I'm
getting more and more depressed, to the point of just really hating
my life and wanting to just hide in bed all the time. I feel I'm
losing the fight, losing the energy to fight =( Sorry to dump on you
all, especially after lurking for so long. You are the only ones who
understand.
Melissa

Hi Savannah,
Relafen is just another prescription NSAID. It's
about equally effective as alot of the others in this
class of painkillers e.g.(Prescription Motrin, Daypro,
Indocin etc.
I had tried it for a while but I found taking 3 or 4
advil every 4 or 5 hours was more effective. Also,
Nsaids are really only good for mild to moderate pain.
Any sort of bad flare you'll probably need something
stronger. Indocin is one of the strongest of these
types of meds,so if Relafen doesn't work you could
give that a shot. Anyway, good luck, hope it works
for you.
Mike
Please share your experiences with Relafen. It is a

hi;
i'm a new member,only just found the site,names charn,i don't quite know what to
say in this intro!.
i'm newly diagnosed(for the 3rd time!!)been treated for rhumatiod arth,for last
7 yrs,3 yrs prior to that , i was told every thing from ross
river,''hormonal'',cfs,fibromyalgia,you name it. but then got a good gp who sent
me to a serg/md who helped.
now have a very GOOD gp who took 1 look at my finger nails(which i'd shown
numerous others) and he said 'you've got pa'.
after looking thru your chat,and other sites it all became clear,why i only ever
had ''some RA signs'',and ''some fibro my signs''.
but all PA &AS.the severe back and neck pain(i can't look up!)the finger nails
pitting ane falling off,the extream fatigue,joint pain,but not quite like RA,the
hot puffy toes. the list goes on.and has done for over 10 years,i now look at
the obviouse lack of mediocos knowledge and cringe,
woops i'm rambeling,and in my intro as well,sorry but it's like a light has gone
on,and i have a flood of emotions,relief,anger,fear,you name it.
well i should give you a bit of an intro ,i'm fem,40ish,mostly dependant on my
carer,use scooter for mobility,live in the country in nsw australia,we were
living further out in the bush but it got too hard traveling 120 km to go th
drs.so we moved to orange , it's a lovely little town-still country but with
heaps of services,
ok ,love to hear from anyone thanks
charn

Hi Anne. Although Remicade is prescribed w/ MTX I do believe Enbrel
is also derived from a Chinese mouse or hampster protein. Enbrel is
not fully human. I believe Humira will be the first "so-called"
fully human monoclonal antibody. I think it has been a cycle where
Remicade was improved to Enbrel and Enbrel will be improved to
Humira (D2E7). That is why the dosing is twice a week for Enbrel
and Humira is bi-weekly. By no means, am I an expert, but that is
my understanding. Hope that helps a little bit. I work for Abbott
Labs (manufacturer of Humira - D2E7) and I've researched a little
bit as well!
Thanks

I was on 20 mg of MTX when I started the Minocycline. I gradually decreased
the MTX by 5 mg every 3 months and I am now MTX free! I take 100 mg of
minocycline everyday (although sometimes I miss a dosage) and I feel great!
Amy in Oregon

I'm brand new to the group and hope that I can get some help and
support here. I have RA, but my daughter has Ps/A and severe
Psoriasis. I really don't know where to start. If I go on a bit
please forgive me because I'm at my wits end and just need to let
some of this out. Steph has had psoriasis since she was six years
old and is now twenty-six. She just gave birth to her first child on
November 1 of this year. She actually had to have the birth induced
a month early because the psoriasis was getting totally out of hand
and she wasn't able to take medications due to the pregnancy. Six
days after the baby's birth she was re-hospitalized for a very severe
case of pustular psoriasis and erythrodermic psoriasis. She was in
the hospital two weeks. She has since been diagnosed with Ps/A. She
can only walk with a walker and is in a lot of pain. Her
dermatologist started her on MTX on 11/8 with a dosage of 22mg.
She's also on prednisone. Right now she's taking 50mg of the
prednisone a day and is decreasing each week. In spite of all this,
she's still in horrific pain. Not only does she have the joint pain,
but her skin was 100% affected by the pustular/erythrodermic
psoriasis. Her dermatologist wants to put her on Enbrel, but I'm
afraid she can't hold long enough till she's approved. I don't think
Remicade is approved for Ps/A and she can't afford the out of pocket
expense since her insurance won't pay for experimental treatments.
Is it possible that the MTX just hasn't kicked in yet? Any input
will be greatly appreciated. Thanks!

Ron-
I have a question about the synovectomy to remove "diseased tissue".
I had one 2 years ago on one knee- before the diagnosis of PA (they
also did a lateral release-which I now regret). My question is
this... since that surgery, my synovium has once again hypertrophied
into my thigh, but the other knee is even worse (it goes about 3/4 up
my thigh)- all of this despite nearly monthly aspirations (upto 300
cc removed!).
What part do the synovectomy's play in treatment? Do they help
retard disease process/damage, or just pain relief?
As always... your input is greatly appreciated!
-Kirsten

Dear group,
Hi all, i joined the group from quite a while but this is the first time i
participate. i'm 32 and have three daughters 6, 4 & 22 months. I was diagnosed
with psoriasis 6 years ago and PA 3 months ago. It started 13 weeks ago with
pain in my feet and later a swollen left foot with 3 sausage toes, i blamed an
old shoes and took ibuprofin, later the pain reached my legs, knees, thighs,
arms, shoulder & neck. 3 months ago i took my blood results to the best rheumy
in Kuwait(that's where i am from) and told me that i have PA. He started me with
7.5 of MTX, two weeks ago he increased the dosage to 10 mg. along with celebrex
and zero results. I don't know if it will ever work for me. I feel really bad
when i can't carry my children or even can't take my clothes off.
Ghaida,,,,

Hi all:
I've been lurking and reading the archives for this list for a few
weeks, but I finally decided to join since I just bought a new laptop
and can now access the web from home.
I'm Karen, age 38, living in Seattle, WA. I was diagnosed with PA in
October 2002 with the development of the "classic" sausage digit
involving my left index finger. The sausage digit arose in
coincidence with my grandmother's death in mid-August, 2002, which is
pretty ironic because I first developed psoriasis after my father died
in 1988. I now joke to my family that NO ONE ELSE CAN DIE! God knows
what would happen!
My story really starts in 1999, when I developed chronic hives. I was
a miserable wreck with hives from head to toe for 2.5 years (I was the
case of the month at University of Washington Med School in October
'99--or Miss October '99 as I like to call it :). I happen to be a
molecular biologist, so I spent a good portion of those 2.5 years
looking online and in medical journals for something, anything, that

When you take the Metho by mouth, your stomach gets a dose more directlym
however, you will still get plenty of nausea and vomiting from a shot at
moderate to high doses believe me. It has to do with the action of the drug-
not the way you take it in!
The solution to the nausea and vomiting problem is easy- ask your physician
for a prescription for Zofran. It is a drug specifically made to prevent
nausea from chemotherapy drugs- which Metho is one of! Another such one is
Kytril- but it is more pricey. Kytril lasts 12 hours however, compared to
Zofran 4-6 so you may want that instead. The main thing is to remember to
ask the doc for the prescription when he writes out your next Metho
prescription! My insurance covered it just fine.
Good Luck,
Michelle
group founder

When I first started on Arava I was already taking Prilosec due to having
been on long term methotrexate use and it bothering my stomach, Needless to
say I was very surprised that within two weeks of being on the Arava I
experienced very bad stomach pain that would not quit from the Arava. The
doctor (rheumy)tried adding in another prilosec and tagamet and sucralfate to
my regimen without stopping the Arava, but the stomach pain persisted.
Unfortunately, I had to stop the Arava completely at the six week marker for
approximately one month (this is how long it took my stomach to "heal up" I
guess you would say.).After that I went right back on the Arava, but this
time I had two Prilosec a day, Tagamet once a day and Sucralfate three times
a day. I did this for six months. Then at my annual physical, I had been on
the Arava for a year by then, my internist, who is also a GI doc, mentioned
there was a new drug called Nexium that he thought would be much more benefici
al to me. I was switched to it instead of all the other three put together!
I am doing fine and it is a year now later!
As far as the Arava effectiveness goes. it cleared up the skin 100% within 3
months!!
My joints cleared up within eight weeks, the second time around that I took
it, but after a year, it's effectiveness it started slipping. and we had to
add in another drug.
I am still on the Arava however in a cocktail with Imuran 250 mg. and until
this week was also taking Kineret indictable daily. Unfortunately the
Kineret had been working well-and then started slipping in effectiveness=to
the point of completely being back at square one-so we decided to stop the
injections and see what happens. My sed rate is 38-and I also have a sinus
inflammation and infection above my right eye-frontal, and I have a small
pneumonia-bacterial -- with lung crackles (whatever they are)? I am sure
being over suppressed has led to these two infections so my doctor gave me
Zithromax for five days to clear things up.
My MRI's came back. The lower lumbar is the same, but the C-spine (neck
shows a large herniation at C-4 as well as stenosis all long the c-spine from
arthritis. The nerve root is impinged at C-4. The neurologist wants me to
try a week of Bextra and then a week of Predisone before I see the surgeon,
so I will. I don't see how the disc will shrink by either drugs action, but
it is worth it to get some pain relief if they provide at least that. The n
numbness and tingling and trouble sleeping when the arms go dead no matter
what position they are in unless I am sitting up in a recliner is the main
problem besides the neck pain itself. What I would give to be able to sleep
in my own bed. Between nerve pain down my right leg and the both arms going
dead if I lie on either side-it is impossible to sleep in any bed.
Michelle
group founder

Please share your experiences with Relafen. It is a new medication for
me and I'd like to hear how it worked on other PA patients.
Thanks
Savannah

Cassie,
My Mom was taking Prednisone and after she started the first tapering down
dose, she had bowel problems. She is continuing with the problems and has
only a few days left on the prednisone. This is a really personal question,
I know, but did you experience any problems like this? If you want to email
me off list, my address is troycheryl@... . Thanks! Cheryl

has anyone heard of the petition to the fda in america to remove
arava,due to
unsafe side effects.?
the petition is avalible on the fda site,put forward by the 'public
citizen'group.it is quite extensive,i'm still waiding thru it.
being on arava myself it caught my attention.
sorry rude of me i'm new to site 'charn' look forward to getting to
know you all.

Sharon,
If you research further I think you will find the MTX has worse side effects
to consider than Prednisone. I have my PharmD, that is a handy tool for me
in dealing with my lupus and PA. The MT, as we know, is metabolized through
the liver and can cause lots of damage if not monitored closely. The long
term effects of it are far worse than those of the Prednisone. I guess it is
the worse of the two evils though. I was on MTX for about 2 years until
about 2 months ago. My liver panels went up and I was removed immediately.
I did have nausea and diarrhea (I fell that was because I was taking it PO
and not IM) . I see a rheumy at Duke in Charlotte, NC and one in Greenville,
SC. They both agreed that it should be held off as a last result because
apparently those of us with PA tent to have more trouble with elevated liver
panels than others who use it. I never realized how very much it was helping
me until they took me off of it. I have never tried it or Prednisone with
antibiotic treatments. I am looking for more research showing the benefits
of the antibiotic treatments for PA as I am weary of taking any antibiotics
due to so many infections becoming resistant. Anyway, if Prednisone worked
for me I would take it in a minute! Just a bit of FYI. Good luck on what
works for you! It is such a long journey for us all, what works for some is
not good for others! This is a maddening disease!
Christina

Hi Kim,
I just wanted to say welcome to the group. There are a lot of knowledgable
people here. I haven't checked yet, but I'm sure others more knowledgable
than myself have responded to your message. I'm so sorry to hear about your
daughter having PA at such a young age. I have four small sons and two of
them have psoriasis. The youngest is 18 months old. They seem to have
aches and pains a lot, I'm afraid they will also have PA, as well as myself.
How was your daughter diagnosed?
Cheryl

Hi Lisa,
My rheumy spread out my MTX over three days (2.5mg 2X per day = 15mg) rather
than taking such a heavy hit on one day. I hope your husband's rheumy
prescribed folic acid as well. This seems to be pretty standard procedure
now. This is no assurance, of course, that the liver will be able to
tolerate MTX. My liver couldn't. However, it took 6-8 weeks before the MTX
began to kick in for me. Before that, I felt no benefit at all. Once it
kicked in, I felt better than I had in years. I played golf all summer and
fall and I hadn't been able to play in 4 years. I was able to handle subway
stairs much better and walking generally became a lot less painful. It
sounds as if your husband's liver readings are being monitored closely
(good), so I would urge him to be patient just a little bit longer. If it
works, the wait will be worth it - if it doesn't, the rheumy has a lot of
alternatives in the arsenal and will move on to something else.
Wishing you godspeed in finding the right treatment for your husband soon.
Kathy

Greetings all,
I believe I've previously mentioned the two "radio-synovectomies" I
had a few years ago on my right knee to kill diseased synovial tissue
caused by PA, instead of undergoing a much more radical surgical
synovectomy. It's called a "P32" injection, and the way it works is
that the rheumy injects a radioactive isotope of phosphorus
(Phosphorus-32) into the synovium of the joint. The radioactivity
kills the inner layer of diseased tissue in the joint without doing
any damage otherwise. When first injected, about 2 milli-Rems per
hour of radiation can be detected by a Geiger counter outside the
joint, but since radioactive Phosphorus-32 has a half-life of only
two weeks, after about six or eight weeks virtually all the
radioactivity has dissipated away through radioactive decay and it
becomes inert and harmless. It's a pity this procedure isn't more
widely available, because it's as easy as having a joint aspirated.
In any case, while reading SlashDot.org this evening I ran across a
link to a story that points out a new danger that wasn't a concern
back when I had my knees done, but is a danger in these days of
overzealous "anti-terrorist" measures. The danger consists of
mistakenly getting strip-searched!
-- Ron
============================================
Radioactive Patients Set Off Subway Alarms
12:55 05 December 02
NewScientist.com news service
http://www.newscientist.com/news/news.jsp?id=ns99993150
Americans undergoing radioactive medical treatments risk setting off
anti-terrorism sensors in public places, and subsequent strip
searches by police, warn doctors at the Albert Einstein College of
Medicine in New York.
A 34-year-old patient who had been treated with radioactive iodine
for Graves disease, a thyroid disorder, returned to their clinic
three weeks later complaining he had been strip-searched twice in
Manhattan subway stations. Christopher Buettner and Martin Surks
report the case in a letter to the Journal of the American Medical
Association.
"Police had identified him as emitting radiation and had detained him
for further questioning. This patient's experience indicates that
radiation detection devices are being installed in public places in
New York City and elsewhere," the doctors write.
Buettner and Surks contacted the Terrorism Task Force of the New York
City Police Department to determine how to prevent other patients
being detained.
A letter describing the isotope used and its dose, its biological
half-life and the date and time of treatment, plus a 24-hour contact
telephone number for the patient's physician should help, the police
said.
But even in the best-case scenario, a patient will have to wait while
the contents of the letter are verified, say the doctors. "They may
choose not to use public transportation to avoid this inconvenience,"
they write.
Journal reference: Journal of the American Medical Association (vol
288, p 2687)
Emma Young

From: pookiegut@...
Date: Fri Dec 6, 2002 5:04pm
Subject: Re: [PsoriaticArthritis] OT: Re: PA Person in North Carolina
Cassie,
I think the below includes so many of us! I had VERY mild Psoriasis, and I had
NEVER heard of PA. Thank God I had a young, smart Family Dr. who as soon as he
realized I had Psoriasis knew why my fingers were stiff.
Tiffany
In a message dated 12/6/2002 12:26:20 AM Eastern Standard Time, dbeamon@e...
writes:
============================================
From: pookiegut@...
Date: Fri Dec 6, 2002 5:05pm
Subject: Re: [PsoriaticArthritis] OT: Re: PA Person in North Carolina
By the way, I have a positive ANA, but supposedly NOT Lupus. Anyone else have
that?
Tiffany
In a message dated 12/6/2002 12:26:20 AM Eastern Standard Time, dbeamon@e...
writes:
============================================
From: pookiegut@...
Date: Fri Dec 6, 2002 5:05pm
Subject: Re: [PsoriaticArthritis] OT: Re: PA Person in North Carolina
And... I was never tested for Lyme Disease. Has everyone here been tested for
that? I have a Negative RA factor.
Tiffany
In a message dated 12/6/2002 12:26:20 AM Eastern Standard Time, dbeamon@e...
writes:
============================================
From: pookiegut@...
Date: Fri Dec 6, 2002 5:09pm
Subject: Re: [PsoriaticArthritis] QUESTION
Hi Gordon,
You presented a question in my head. How does a Dr. rule out antibiotic
treatment? Who is it appropriate for? I want to know how to rule this out
before I start on Enbrel. I mentioned before I have never been tested for Lyme
Disease. What else should I be tested for that deals with the AP treatments?
Thanks!
Tiffany
In a message dated 12/6/2002 1:33:47 AM Eastern Standard Time,
geliott@... writes:
============================================
From: pookiegut@...
Date: Fri Dec 6, 2002 5:11pm
Subject: Re: [PsoriaticArthritis] Sausage Digits
Sausage digits are fat fingers/toes, and often times are warm to touch due to
inflammation. They don't move most of the time. When mine were that way I
could not bend my fingers. You sound like you have a Psoriasis patch that has
thickened.
Tiffany
In a message dated 12/5/2002 11:48:12 PM Eastern Standard Time,
ma-kelley@... writes:
============================================
From: pookiegut@...
Date: Fri Dec 6, 2002 5:21pm
Subject: Re: [PsoriaticArthritis] OT: PA person in North Carolina
Christina,
I will call you SOON! My phone at home has been out with this storm, and I am
still at the office right now... hence e-mail availability. Call you soon!
Tiffany
In a message dated 12/5/2002 5:55:59 PM Eastern Standard Time, CND110370 writes:

Michelle,
You have Embrel confused with Remicade. Enbrel is entirely human and has no
problem with mouse protein. My rheumy says the Methotrexate helps the
Enbrel to work better.
Anne
[Moderator's note: Anne, next time you (or anyone else on Enbrel) see your
rheumy, how about asking why Methotrexate helps the Enbrel to work better? Is it
possible to develop antibodies to foreign *human* proteins? Ron]

Hi Gary,
Yep, Sulfasalazine is a DMARD - at least according to the NPF. See:
http://www.psoriasis.org/wc2001/arthritis.htm
QUOTE: "DMARDs (disease-modifying antirheumatic drugs) are
medications that can slow or stop the progression of disease and
joint erosion. They may take up to several months to work. Dr.
Gladman reviewed the most widely used DMARDs, including antimalarials
such as chloroquine, injectable gold and oral gold therapies,
injectable and oral steroids, sulfasalazine, cyclosporine,
azathioprine, leflunomide and methotrexate, the current gold-standard
DMARD therapy. Most of these drugs have significant potential side
effects and therefore must be used with care."
As for your ex-rheumy, that guy has to be one of the biggest jerks
I've ever heard of - you're much better off without him. In
fact, "jerk" is too nice of a word, but if I used the words that come
to mind, I'd have to censor my own post!
I know Queensland is a HUGE province, but perhaps if you mentioned
some major town near you, some of our other Australian members could
recommend a rheumatologist near you? I know Gordon lives in Bli Bli,
which is just north of Brisbane, and he probably knows (or knows of)
most of the rheumies in the area.
Good Luck,
-- Ron

All this discussion about prednisone side effects has been making me
very nervous!
I also have done quite a bit of research on prednisone and agree that
it can have some pretty terrible, frightening side effects,
especially over the long term and in higher dose (e.g., premature
aging, cataracts, diabetes, osteoporosis, weight gain, "moon-face"
and mood swings) -- as well as withdrawal difficulties and
diminishing effectiveness over time. However, I'm hoping that after
my initial dose to "put out the fire" I'll be able to switch to very
low dose, intermittent use, similar to what the "Microdose" group
recommends.
In the last few days I've been tapering down from my initial
prednisone dose (5 days x 20 mg) -- I'm now down to 10 mgs. I've
discovered that splitting the pills in half and spacing the dose out
(i.e., taking half of a 5 mg pill 4 times a day) I still feel very
good, with no side effects. Also, I was initially advised to take
all pills at once in the morning, because prednisone can cause
insomnia. However, I started spacing the doses out over the course
of the day after a while I think because of taking all those pills at
once I felt quite anxious & wired. It's much better this way. Of
course I'm wondering what will happen once I'm off of the prednisone
completely...
As I mentioned, I have recently begun trying the antibiotic protocol
using minocycline and have also been using prednisone for the last
couple of weeks for the following reasons:
- Prednisone can be useful to knock out a persistent flare and
as a bridge between DMARDs (as an interim solution while waiting to
see if a DMARD will work).
- The antibiotic protocol says low doses (less than 10 mg) can
be used on a short term basis to knock out a persistent flare, in
addition to NSAIDs.
- The antibiotic protocol also says reducing inflammation is
key in allowing the minocycline to permeate.
- Minocycline seems to work best in early and less severe PA.
Since I'm not in the early stages (have had PA for 4 years which was
getting worse until I took the prednisone) I want to increase my
chances of having the antibiotic work by reducing inflammation with
prednisone & NSAIDs.
- Several university studies combined the minocyline with
prednisone and concluded minocycline can be very effective to the
point where prednisone is eventually not needed.
- The "Microdose" (see archives for more info on "microdose")
arthritis pain managment centre combines antibiotics with oral
cortisone (similar to prednisone) . They start with a higher 3 week
course of cortisone to "put out the fire", then they switch to
extremely low dose, very intermittent cortisone/prednisone, taken at
the very outset of a flare (they say they teach people to recognize
when a flare is starting). They claim a high success rate with no
side effects from the cortisone even after 2 years (but for some
unknown reason they stop using the minocycline after 90 days).
Sharon

Shane,
My name is Ken I also live in Calgary. I was diagnosed about a year and a
half ago by Dr. Atkinson at the Arthritis center in the Rocky view Hospital.
It took him about 2 seconds to recognize my condition. My family Doctor was
stumped for 2-3 months. He put me on Sulfa and also on Vioxx. It made a
major difference for me. The reason I chose Sulfa over Meth was I like Beer,
and Methotrexate does not allow any alcohol. I went to see him on Friday Nov
27th. He recommended I go on Enbrel.I agreed (I can still drink beer) I took
my first shot on Wed Dec.4 and noticed a difference within 3-4 hours. My
recommendation is for you to see this doctor as he came highly recommended
to me as one of the best in Canada. Vioxx worked for the inflammation but
you need another drug to stop the progress. (Just my opinion). If you would
like to talk I live in Parkland. My E-mail address is kenn@... This is
a great site for different opinions and suggestions. Unfortunately I only
have time to lurk occasionally And your posting caught my attention.
Ken N

I'm so glad someone brought up the topic of AD's. I work with so
many people who have chronic pain who are too ashamed (or in too much
denial) to seek psych. help.
Just as there is a chemical imbalance that causes our flare-ups and
pain. There is a chemical imbalance that causes depression. As
people with chronic pain- we are at SIGNIFICANTLY higher risk for
this imbalance. There is a chemical reaction in the brain that
happens in response to pain- when pain is prolonged that "gateway" is
left open and anxiety, tension, depression can all result.
Also- looking at pain control from this perspective- it is commonly
felt that by treating the "mood" chemicals, pain perception can
actually be better controlled (as the same "mood" chemicals are also
involved in pain response).
I hope this makes some sense! It's a somewhat controversial area and
it's been awhile since I've researched it. I would suggest this,
however...
Disease control and Pain control are not always the same thing.
There comes a point at which the disease is as controlled as it's
going to be and there is still pain. I would STRONLY suggest that
the addition of a pain management specialist be included. Especially
one that includes PT, Psychology, and MD as parts of their treatment
team. (They should be certifed in pain management- usually
anesthesiologist with additional training in interventional medicine)
Hokey Smokes... this got long!
Hope it's some food for thought!
Kirsten

I too was "praising the Gods of Prednisone" when I was first put on
it. I was able to walk normally for nearly 1 month!... 9 months
later however, the prednisone is not working very well anymore- but
every time I try to come off of it, the inflammation gets more severe.
I've gained 80# in the 9 months I've been on it, and, working in a
hospital, have seen all too frequently the side effects of long-term
pred. use.
I would stress to your doctor the fact that this disease is not going
away, and so medications that you can be on long term are always
best. I would take Meghans advice and try several of the other meds.
first.
I know it's hard- when you feel so good on Prednisone... but it WON'T
LAST!
Good luck!
Kirsten

aside from staying on prednisone, are a) add celebrex/vioxx/NSAID, b)
increase MTX, c) add a pain killer, such as Ultracet/Ultram, d) get
a systemic cortizone injection, e) switch to Remicade instead of
Enbrel. Those are all things that I have gone through in the past to
present. My arthritis is usually manageable (not always, but mostly).
Hope you find some relief soon.]

"I have the HLA-B27 genetic marker, and a female cousin of mine who had lupus
(sadly dying from this condition) also had the same genetic marker and we often
exchanged the similarities of our two conditions and the treatments we were
receiving."
Gordon,
I also have the HLA-B27 genetic marker. My mother died from complications of
lupus at age 61. My father had psoriasis. I have a first cousin who has lupus
and another who also has psoriatic arthritis. We compare symptoms and treatments
also.
" . . .a more active immune response to bacteria than the general population" --
interestingly, I am experiencing a "flare" with PA now, and the dermatolgist has
prescribed an antibiotic (Keflex) to treat the psoriasis. It seems to me the
more scientists learn about genetics the greater our chance of more specific
medicines being developed for PA. The question is, will they be affordable? I
am thankful for our medical insurance which pays for my Remicade treatments.
The dermatologist has applied for me to receive Enbrel due to my severe
"flaring" during 4th week of 8-week cycle of Remicade. While I am very grateful
that our insurance affords me the latest treatments, I am very concerned about
how dictatoral both insurance companies and government assistance programs have
become. Hopefully with more of us on these drugs and their effectiveness is
proven, the cost will go down. The Remicade was so effective for me in the
beginning, it is disppointing to me to once again have to make a change in
treatment. If Enbrel is the answer for long-term treatment, it needs to be
affordable (available)for everyone.
Gordon, your perseverance in the face of this disease, and your willingness to
share your experiences with us, are always encouraging to me--thank you, Linda
in VA

Hi Dan,
I also had amazing results from the MTX. I am on 10mg per wk. I
have been on since May. So far, I am mostly pain free. I do get
creaky the day I take my dose. No negative side effects, but my
Psoriasis has been acting up a quite a bit since the fall & winter
arrived. I guess the lack of sunshine is taking me to task.
I do not know too much about Enbrel, but from what i see in this
forum, different drugs work or don't work for different people. I
would suggest that if you found something that is working for you,
without negative effects, stick with it, because other drugs may not
work as well or at all.
Stay Well
David

Well ron i did not know sulfa was a dmard.Last year i was on 2500 mgs a day,but
on christmas day after 10 weeks on it both feet swelled up, full of fluid not
much pain but attracted a lot of interest from everyone. They were huge and
heavy.I went off sulfa that day and told rheumy what happend next visit.Bad move
that was he said they take three months to work and i shouldnt have stopped
taking them and didnt need to see me any more. Back to doctor Bill. Bill agreed
my hands are getting worse and my fingers look wierd. (I try to hide them when i
hand over money at the shops) people stare.Currently im on 200 mgs of ketoprofen
daily but Bill said he is bringing out the big guns next visit, two weeks time.
I think he should refer me to another rheumy but i'll see what poison he
prescribes.I can always ask the group about it when i find out what it is......
Gary in hot & on fire queensland.

Hi
I have been lurking for some time. My daughter Katy was put on minomycin and
ibuprofen which really helped. Unfortunately she had to stop taking the
minomycin as it began causing Candida. She still takes ibuprofen (she has
nicknamed it 'evilprofen') occasionally, especially when the pain increases. I
notice Deano is on both prednisone and the antibiotics. The Rheumi suggested
Katy go on prednisone but as it is a steroid and can cause weight gain (Katy has
put on 30 kgs in the last 2 years) more weight gain was the last thing she
needed. She actually seems to be in remission now - the drought here in Eastern
Australia might have something to do with it. No rain less pain?
Take care. Lots of Love
Sue and Katy

Is a sausage finger or toe something that occurs overnight or is it a
condition that simply develops over time? Between the middle knuckle
and the end joint of my ring finger on my left hand I'm developing
what I would describe as a "pad" on the top part of the finger. The
skin is leathery and stiff. Does this sound familiar to anyone?
Mark Kelley
Parker, CO

Hi Tiffany, I'm 42yrs old. I joined this group about 2 1/2 to 3 yrs
ago just a few months after I was diagnosed with PA. I was diagnosed
on the first visit with the Rheumy who happens to be in New Bern. I
really liked him but had to switch because my insurance would not
cover him under our plan. He was out of network and didn't want to
take a cut in his pay. He is Dr. Frazer at Coastal Arthritis and
Rheumatism. He is very aggressive in treatment. I was referred to
him by a Podiatrist I was seeing for my left foot. The podiatrist
thought I had PA and sent me to him. He was the first available
Rheumy to be able to see me and I had to wait a month for the initial
appointment. The orthopedic doctor and my family doctor didn't have
a clue as to what was going on with me. That rheumy checked for
everything and did a physical even though he thought it was PA. He
checked for RA, Lymes Disease, and Lupus. I had very little
psoriasis on my scalp at the time of that visit but within 24-48hrs
after starting Prednisone I was covered all over (thought it was a
drug reaction or possibly that plus yeast) went back to the rheumy
and he said it was psoriasis. I looked awful and felt worse than I
looked. So, about a week later he started me on MTX along with the
Prednisone and I didn't get to feeling better until after I came off
the 6 weeks of Prednisone and had been on MTX for 3 months. But I
did regain some muscle strength fairly quickly once the Prednisone
was stopped. I had never heard of PA until I got it. My mother has
psoriasis but not the arthritis. I just had to be the lucky one in
my family to get this mess. Cassie