For those who have Psoriatic Arthritis

In a message dated 2/4/2003 1:14:39 PM Eastern Standard Time,
PBias@... writes:
Hi Pat,
I thought that both PA and RA patients only had a 1 out of every 3 success
rate... or at least that's what my information pack says, AND I thought it work
easier and better in PA patients than in RA patients. (From what I have read RA
is about a 35% success rate, and PA is 50%) What % did your calendar say for RA
patients? 50% is a great success rate, compared to many other drugs out there.
Tiffany

Good Morning Guys and Gals,
In a couple of hours, I have a telephone appointment with someone
from Social Security who will be interviewing me for an SSDI
application (I elected to do it over the telephone rather than in
person).
Does anyone have any advice on what I should and should not say,
etc...?
Thanks,
-- Ron
P.S.
I've found the best solution yet for psoriasis itching - it's a
copper scouring pad called "Chore Boy." After soaking my psoriasis
scales with a damp paper towel surrounded with plastic wrap for a
couple of hours, I was able to scrap away all the psoriasis scales
with the copper pad with very little trouble - and it caused far less
bleeding than using a knife usually does. I also have a plastic
scouring pad I plan on trying, but can't imagine it could be much of
an improvement over the copper one.
I had quite a thick build up of scales on my leg, because I haven't
done much except hibernate and sleep since my Remicade infusion on
Friday. For some reason the infusion "zonked" me out for longer this
time than the first two infusions.

Hi, I mainly read the posts but I was wondering...Is anyone one on Bextra,
Medrol and Enbrel? Thanks!
Sarah D in MN

Maureen,
Good luck with your toes, I know what you are going through.... and thank you
Ron for your wonderful support in this matter of my toe surgery messages and
photos.
Lisa #2
"Maureen S." <goldies_mom54@...
June of 2000 I had forefoot reconstruction surgery on my left foot. All of my
toes were hammer toes. My surgeon fused the big toe and repaired the hammer toes
, I had the pins in all my toes but I also had to have the metarsal bones
removed because the padding that covers them was gone . Unfortunately he has to
redo that surgery on my toes because the second and third toes are turning
outward. My third toe is bent so far over it is down behind my little toe. It is
impossible to get a shoe on. My surgeon said he has never seen this happen
before. He thinks because of my knees being so bad I was not walking right may
have contributed to causing those toes to turn. I still have to have my right
foot done but he wants to correct the left one first. maureen
Lisa wrote:I just underwent toe surgery to straighten my 4th right /better
health for all of us,
Lisa #2
[Ed. Note: Lisa#2, thank you very much for offering your photos for posting on
the PA forum - Yes, I think that would be wonderful! Please send your photos to

Some have been saying that this biologic will only work on the
psoriasis but have not offered any evidence otherwise.
Amevive will also help with the arthritic attack since the same T-cells
will be recognizing and attacking synovial membrane cells to cause the
pain and swelling. How effective it will be away from the skin remains
to be seen but initial work included PA*
*ACR: "Alefacept Reduces Synovial Inflammatory Infiltrate and Improves
Outcome in Psoriatic Arthritis"
http://www.pslgroup.com/dg/20d91a.htm
Another company is testing its own T-cell inhibitor for PA
(XOMA/Genentech)
*"XOMA Initiates Pase(sic) II Clinical Trial With RAPTIVA
(efalizumab) in Psoriatic Arthritis "
http://www.xoma.com/news_events/nr_03_01_30.jsp
David

Ron, I also use a good scalp cleansing shampoo (coal tar and pine tar). A few
days before a visit to the barber, I also use a cortisone cream so it is as
clean as possible. I know he appreciates this.
John and Ron, I know I have posted on this before, but I have an electric
adjustable bed, able to raise the head and foot. I am able to get it in a
position where it greatly relieves the pressure on my long-suffering spine. The
only thing is I do not feel like getting out of bed.
Regards, Gordon

In a message dated 2/3/03 7:56:44 PM Central Standard Time,
thebutch77@... writes:
Hi Lost in the Pain In KC.MO. Sorry I dont know your name. I've certainly
been trying for years to see the big picture of psoriasis, unfortunately it
is still a jigsaw puzzle with a lot of peices missing. I'm hoping that a few
more people like yourself will chime in and bring along one of the missing
peices.
After reading your post I wondered when did the psoriasis start in relation
to all the other problems youve had? I'm curious about the "unrefined DDT"
thing. How did that happen? I accidently poisoned myself with malathion
by absorption through the skin one time and wondered of that had anything to
do with the big increase in psoriasis shortly thereafter. I havent heard
many other people relate a similar story so I decided maybe there wasnt any
connection.
What was the reason for your colon resection, did you have a blood clot in
an artery that supplied your colon? There are many knowledgable people in
this group and Im sure you will receive good answers to any question on
psoriasis and PA. Orin

Fortunately, most of my psoriasis is normally hidden - mainly in the scalp under
the (remaining) hair and in other areas not normally exposed to view, except for
the left arm. I do have snowfalls from the scalp and this used to bother me
when I went to the barber for a haircut. However, barbers seem to understand
better than others. With my regular barber, when I first went for a haircut, I
explained the condition in the scalp. If I remember rightly, he said words to
the effect "Don't worry about it, we see this often and know its not
contagious".
I read an article many years ago on psoriasis and the history of its diagnosis,
and it stated that research had led to the conclusion that only a little over a
hundred years ago, it sometimes was misdiagnosed as infectious leprosy. The
poor unfortunate would then be incarcerated in a leper colony. Thank goodness
we live in more enlightened times !
Regards, Gordon
[Ed. Note: I always shampoo my scalp and scrub it with a shampoo brush (see
http://snurl.com/pnz ) before my barber visit. The one time I didn't do that
with a previous barber (he's since moved out of the area - no, not because of
me!), I had to spend most of my entire visit explaining to him that it was not
"A really bad case of dandruff - you really should do something about it", but
that I was spending (at that time) around $100/month on medications and that a
simple dandruff shampoo wouldn't help. So far, my new barber hasn't said a word
about it although I have mentioned that I have psoriasis. I think it's only
polite to shampoo before a barber visit, because even though it's not contagious
those tiny little flakes tend to fly all over the place, and I'm sure the barber
would prefer not to get them all over everything and perhaps even inhale them.
In fact, when I was working I shampooed my scalp every single day, and it was
the only thing that really helped control the scalp psoriasis. Now that I'm off
work and don't get out much, I don't maintain my personal hygiene as
meticulously as before however. :-o In fact, last month I even tried cutting my
hair myself! Regarding psoriasis contagion - I once asked my dermatologist about
it, and he said that no one has *proven* that psoriasis isn't contagious. He
said the only reason it is believed to be non-contagious is that those who share
a household with someone who has psoriasis don't also get the disease. Ron]

I too have a scoliosis to the left apex in the cervical spine - I have been told
that the PA spinal degeneration is affecting it and it could also have been
present as a mild birth defect and now being aggravated. Similarly, I have a
kyphosis (hunch back) in the thoracic spine which is worsening. The muscle
spasms are attributed to a noticeable loss of spinal lordosis (natural curvature
of the spine).
Regards, Gordon

There is no way that any rheumatologist would give you 90 milligrams of
Methotrexate! I believe half of the 2 cc syringe is 25 mg, and all 2 cc is
50 mg.
I could be wrong - I haven't injected myself for years - now I use prefilled
syringes.... Is there someone out there who is a pharmacist type who can help us
out here. In all my years as founder of the board, I have only known two people
to take 60 mg a week as a maximum - most took 50 mg a week as a maximum
injection - most people took much less. Never, never 90 mg!!
Michelle
group founder
[Ed. Note: I'm not a pharmacist, but you are correct Michelle. Deborah admitted
she was "mathematically challenged tonight" ;-) when she posted about the 90 mg.
Anne Mills and myself (Msg#'s 25033 and 25052) have already pointed out that 0.9
cc of injectable MTX is equivalent to 22.5 mg of the tablets. Ron]

I have taken Toradol, first time was by injection in the post operative unit
of the operating room from some elbow surgery I had. It worked like a
charm!! Then the doctor gave me a two week supply to use at home instead of
the usual tylenol with codeine because I am allergic to codeine and even
synthetic codeines like Tylox. At the time Toradol was brand new on the
market, so the doctor was very excited to use it, as it was expected to be a
very strong medication, and an NSAID rather than a narcotic! Unfortunately,
as the years have progressed, side effects to the kidneys have come up, and a
new warning now has been written up that you cannot take it for more than two
weeks running (around the clock that is), or you risk serious kidney damage.
Dagnabit! I can attest that it is a fantastic working NSAID too!
Sincerely,
Michelle
group founder

I guess, I am called a lurker as I have never posted. I see situations here that
brake my heart. Others, still don't how bad things can get....
I have been diagnoised with bi-polor disorder, the pa/a, I tested positive for
adhd and deslicexia. These are a few of my favorite things. Major colon
re-constructiion surgery, emercengy had surgery ( the Dr. lost count of stiches
at 264 ). I was poisioned at 19 by the unrefined form of DDT! That was fun.
I have broken as many bones as Evil Knivel. To much of a wild child.
My question is, does anyone private peroson, Doctor, Hospital, expermintal
lab....anyone that might be able to LOOK at the big picture and not each problem
seperately.
I am just starting this jurney and would like some direction from thouse who
really know.
Any and all help is appreciated. This is getting bad enough, fast enough, that
it is effecting my job.
Lost in the Pain In KC.MO

My infusions (double doses) were lating about 3 hours.

Melissa,
This is a drug for P, not for PA. My Dermatologist & Rheum have told me that
Enbrel covers both for most people. I don't know about you... but I would
certainly choose one drug over 2. Go for the Enbrel! (I have heard the Amevive
will help PA some, but not like Enbrel... I don't know how founded this info is)
Tiffany

I am also interested in this since I will sooon be without insurance.
Leslie

Hi John,
You have a very interesting story. May I ask if the waterbed also helped your
skin? I wonder if there is something in regular bed materials that you are
alergic to?
Doug

Imuran ( also known as Azathioprine ) has a completely different
chemical structure to the Sulfonamide antibiotics.
Biologically, they will behave differently.

Erin,
I had Lasik surgery on my eyes done a couple of years ago. I was already in
severe pain from PA though at that time.
Robin
Robin, Penny, Chance, Heidi, Heather and Hope (Florida)
http://www.geocities.com/goldens4life2000/index.html

Toradol is a very effective NSAID that is also very toxic. It is
normally used post-operatively instead of or in conjunction with
morphine. It is not recommended for use for more than 5 days.
Personally I find Ultram (Tramadol) to be effective for the more severe
pain episodes but some people don't. Ultram is not an
anti-inflammmatory.
On Sunday, February 2, 2003, at 08:03 PM, xmac23 <xmac23@...

I've reread your post several times and I just don't see how this is work
discrimination. Your supervisors responded to a complaint by your
coworkers. They did it sensitively, privately, without publicly humiliating
you. Your new coworkers obviously know nothing about psoriasis so here is
your chance to go to them personally and explain, educate them. As a
near-LPN who will no doubt encounter this condition in his or her career,
your coworker will probably be very thankful that you've given them a chance
to ask questions and broaden their knowledge.
We have a condition that looks frightening and horrendous. Do you remember
the first time you broke out or the first time you realized that you had P?
I do. I wanted to take a potato peeler to my skin! I have had to explain
to lots of people that I'm not contagious. It's OK. I work in a jail and I
can't tell you how many inmates have shrunk back from my hands and asked if
they were going to get something. It's kind of funny since we are always
worried about catching something from them! I explain what it is, how to
spell it, no I don't know why I have it. My current boss is an
endocrinologist and he is constantly sending me e-mails about snake oil
treatments he's heard about. I have to laugh.
I think that expecting you to clean up after your skin flakes is only
reasonable. If you are the only one who works at a particular desk, no
problem. But if you have shared space you really do have to be considerate
of your coworkers. No matter how much you understand the physiology,
biology and immunology of P, no one wants to be faced with someone else's
skin flakes on their desk or work area.
If I've read your other posts correctly, you have never tried MTX? That is
the ONLY thing that ever cleared my P and it lasted for 2 yrs after I quit
using it. One of my coworkers who has very severe P, bad enough to put him
in the hospital with cellulitis, has had a complete remission with Enbrel.
I don't know what else you've tried but new drugs are being approved and our
newsletter editor keeps us posted on them.
Good luck! And take the opportunity to educate before you litigate.

In a message dated 2/2/2003 4:20:40 PM Eastern Standard Time,
katiekind@... writes:
Hi Kathy,
I think stress of surgery most definitely brings on PA. In the last 4 years
I had to have 3 surgeries. One was on the colon for diverticulitis and then
also a hernia repair and then I had cysts on the ovaries. Now I had knee
surgery 5 months ago. My P and PA is the worst it has been. I now have pain
in all joints and walking is unbearable. Starting the Embrel as soon as it
arrives.
Janet

In a message dated 2/3/2003 2:19:22 AM Eastern Standard Time,
CTNATIVE@... writes:
Yes Melissa,
I am almost an RN. Had to stop school because of pain but hopefully will
finish some day. The hemoglobin carries the oxygen and iron to your muscles.
The lack of oxygen can be causing to muscles to feel weak.
Janet

According to the AP press release by Lauran Neergaard, which appeared in the
2/2/03 edition of the Philadelphia Inquirer..."Amevive, which comes in
intravenous and intramuscular-injection forms, will begin selling Monday, said
Biogen Inc.m its maker."
All the Best...Pete
does anyone know when/if it is available yet? I go to dermie feb 14th, and
am willing to try it.

Hi All
I am new to this group. I developed psoriasis when I was 18 (now 41)
following a motorbike accident. The condition is fairly mild, only
affecting both knee's, elbows, inside of ears and the side of one
leg. I have tryed all the usuall creams and ointments over the
years, but none work long term. Did try a new one last year called
Dovabet. This was fantastic, but as it was so strong had to come off
after a month. The flare up when comming off it left the skin worse
than when started. The area that I find hard to keep pain free is
the inside of the bottom, any sugestions.
The arthritis side developed later, when about 25. Very quickly it
got quite bad. I was having difficulty walking and even turning a
key was hard. I went onto the steriods at the start and this helped.
Then tryed oral gold. This too relived the condition. Then a friend
suggested a waterbed. We brought one. within weeks things were much
better. Over aperiod of a year I came of all medication. The last
eight years I have had no pain. My question is. Has anybody else
found a waterbed to help and have others had periods of remission
and how long has it lasted.
John

In a message dated 2/2/03 3:20:48 PM Central Standard Time,
geliott@... writes:
I dont know about the possible variance in effectivness from person to person
but I did want to comment on one distinction between morphine and marijuana.
It would be very easy to overdose on morphine as I suppose you could tell by
the effect that very small doses of morphine has. I would think it is
virtually impossible to overdose on marijuana by smoking it. They would at
some point develop mild asphixia and pass out to sleep it off. A person might
overdose to some extent by eating it but who is gonna eat a whole cup full
and if they did they would have digestive disturbance which would soon,
possibly forcefully, eject the excess from one end or the other of the
digestive tract. Marijuana is also not addictive in the same way as some
opiates such as morphine so a chronic user is not so likely to keep wanting
more and more. There is a tendency to develop a tolerance and opt for a
higher dosage but there again there is a physical limitation to intake. If a
person were to concentrate the active ingredients, mainly delta9,
tetrahydracaanabolic acid, as in the case of hashish then it might be
possible to overdose. Orin

In a message dated 2/2/03 3:20:25 PM Central Standard Time,
leslieiansa@... writes:
Hi Leslie you are about due for some GOOD luck for a change arent you? Glad
to hear that the injuries from the wreck werent that bad. You mentioned a
friend in grade school that was in a wheelchair from scoliosis. She was
probably born with spina bifida which is a condition where the skin and bone
of the spine dont completely form leaving a hole that exposes the spinal
cord. A similar failure in development in the womb is responsible for cleft
pallate and hairlip. You probably dont have to worry about ending up in a
wheelchair from scoliosis. If it wasnt serious enough for your rhuemy who
took the xrays before to mention it then obviously he wasnt concerned with it
and it is likely a result of temporary muscle tension from the wreck. Bad
posture over many years can cause mild scoliosis but that rarely results in
functional deficit. When you are 70 you may develop a more severe scoliosis
as result of osteo-porosis but that would be very unlikely at your age. One
other possibility would be related to PA but you would have known about that
a long time ago if it were advanced enough to cause deformation of the spine.
Relax for a few days, watch some cartoons and soon as you can do a few
stretching excercizes and this too shall pass. Comfort and peace, Orin

Thanks Gordon. I just hate it that everytime I get on my feet again I get
knocked right back down. I know there is always someone else much worse off
than me but i just wish for once something would go my way. I felt that I
was doing better up until this past week. I was going back to work, I
accepted that I will always have some degree of pain and had planned on
moving on with my life. Then everything fell apart. I can handle one or
two setbacks. I just feel overwhelmed when everything hits me all at once.
I was seriously hurt in a car accident before. I would have been killed had
I not had my seatbelt on. This one brought back all those memories. I do
feel lucky cause I know things could have been a lot worse. It's just more
pain, no car, no job, no money, ect. My mom mentioned counseling right
before she called me a hypochondriac. She said if it was her she would have
gone into work anyway, regardless of what the dr. told me. i find that
absurd. If my dr. thinks I should take time off for the muscles to heal I
should listen to him, shouldn't I? Then she said that my husband is going
to get sick of me being sick all the time. She's afraid he will leave me.
She also told me that I am not fun to be around. They both tell me I need
to get out of the house more often. They just don't understand that I don't
feel like going out. I am exhausted and in pain. I feel like they think I
make it up. Will check into counseling. i am sure it would help. I know
as bad as I have it someone else has it 100x worse. And, I know that I will
get through this. I am just disappointed.
take care,
Leslie

My doc prescribed effexor for fibro and it caused fluid retention. I went
several days without urinating and spent Easter in the emergency room. Very
bad side effects for me. Didn't do anything for my pain.
Leslie

In a message dated 2/2/03 4:21:15 PM Eastern Standard Time,
witzzzend@... writes:
I have been on Celebrex for 2 years. Only issues I have had are Edema in the
ankles and high blood pressure. (not real high.. but higher than normal!)
Tiffany

In a message dated 2/2/03 4:21:54 PM Eastern Standard Time,
celticangyl@... writes:
Melissa,
I would certainly try to take some action on this... I am just trying to
think how I would go about taking action, and I haven't figured that one out
yet. I know you are thinking about Enbrel, so also know when you go Enbrel
your P should significantly improve.
Tiffany

Mike,
After going on Enbrel in August of 2001, my psoriasis almost completely cleared
up, both skin and fingernails. At the time I was taking 10 pills of MTX a week.
I felt so good on the Enbrel that I chose to back off on the MTX. I went down
to 8 pills with good results. Recently, I went to 6 pills and seemed to be
doing OK. About the same time, my Psoriasis flared. I didn't make the
connection with my decrease of the MTX. I totally gave the credit for the
clearing of my Psoriasis to the Enbrel. Now I think it was the combination of
the MTX and the Enbrel. I have increased my dose back to 8 pills, to see if
things will clear up. I go to Salt Lake to see my Rhumatologist in 2 weeks.
I'll ask him what he thinks.
In response to a question someone had the other day regarding Enbrel and
fatigue. After starting Enbrel my fatigue level which was very bad, really
improved. I became a different person. You no longer find me sleeping in my
car on breaks and at lunch time.

My long term experience with many drugs including those two would encourage
you to wait until the Remicade stops working for you. Then you should try
Enbrel. Unfortunately, it has been my experience that all the drugs
eventually stop. There is also another injectable out called Kineret you can
try, and another one on the way next month called Humira too. I recommend
getting the most time out of each medication that you can.
As others have recommended, now that you have not had an adverse reaction to
the Remicade, perhaps the doctor will okay speeding up the infusion for you
too!
Sincerely,
Michelle
group founder

I get Fatigue and weakness in my large muscles in my legs and arms almost
every day after climbing the stairs or doing 20 reps of my current physical
therapy exercises. I am aware that I am anemic and that I do not have the
proper amount of hemoglobin in my bloodstream. I have been wondering if that
is one reason why my muscles are not working full tilt.
Michelle
group founder

Hello All,
I just joined the group and thought I'd introduce myself. I am 21 years old and
have had PA for 3 years. At first my docs had me on Celebrex and Vioxx but they
only made me sick. Then I went on methotrexate which helped with the pain and
swelling but I had and have alot of side effects. Then enbrel came along. It
didn't seem to work at first and now it works well and has cleared up my P and
helped with my A. I am currently weaning myself off of the MXT, and I can't wait
to be done with it.
My first question is does anyone else have small localized reactions to the
enbrel at the injections sites?
My second question is has anyone had LASIK surgery? My opthamologist can't quite
seem to find out if PA is a contraindication for LASIK.
Thanks very much and I'm very glad I joined the group the things I have read so
far have been very helpful and informative. Its good to know I'm not alone!
-Erin

does anyone know when/if it is available yet? I go to dermie feb 14th, and
am willing to try it.

For those of you who are waiting to apply for social security disability for
any reason- stop waiting! It will be a big problem for you if you do!! I
found out the hard way and I almost missed out on being able to draw on my
hard earned social security disability way back when. I finally won my case
after the third go round and meeting with the Administrative law judge who
saw it my way back in 1993.
The claims representative at the social security office told me that I just
barely squeaked by as far as eligibility was concerned in applying for social
security disability! I asked her what she could possibly mean, since I had
worked all my life since the age of 15, on the books . all four quarters a
year- up until the age of 1986 when I had my first child. Then I
"semi-retired" and tutored high school students for the next two years off
and on until I was no longer able to carry on doing that, due to my health.
I thought, like most people that as long as I had 40 credits paid in, I was
set for life- even if I was not currently working for the past few years.
This is apparently not true. There is a special formula they use. You must
also have worked so many quarters out of the last three or four years in
order to be eligible for the social security disability. Mind you- there is
no partial disability, and there is no temporary disability. They review
your case every year, 3, 5, 7, etc,,, as they see fit for the rest of your
life.
I found it most disturbing that if I had not paid in income taxes and social
security tax on the couple of thousand dollars in the last two years of
tutoring money I made, I would not have been eligible at all for any
disability- even though I had worked from age 15-36. There are four quarters
in each year- so that is well over 200 quarters. The way the representative
explained it to me is that if you do not keep your "policy" up to date. it
expires on you!
Poor women in these United States that stay home with their children who do
not know of this discriminatory action!
The husbands earn the income, the wives stay home and take care of the family
and homestead- if ever I have heard a rationale for paying a woman for what
she does for the family- even if it is a token amount- this is it!
Michelle S.
group founder

Cheryl --
I was on MTX for 1 year and I have never been so tired, fuzzy headed and
generally sick feeling in my whole life. I will do almost anything to stay off
it. It did a lot of good for the P and PA (I think) but I feel like I have my
life back on Arava (I also take Plaquenil and Vioxx which I was taking while on
MTX). Arava is much more expensive and my insurance just cut the percentage
they pay but I am going to keep taking it as long as I can. Initially I thought
it wasn't working as well as MTX but the other day I noticed that I was actually
able to walk with a normal stride instead of the short mincing steps I was
taking before.
Good luck with your decision. Cheri

I saw my PCP regarding my car accident. He said that I have very severe muscle
spasms and gave me a shot of topomax (?) and flexeril and vicodin. I am feeling
a bit better today but my neck and back are very stiff and sore. The thing
that worries me is that my doctor took x-rays of my neck and back. He pointed
out to me that I have some acute scoliosis. He said that the spine is supposed
to go in a "s" shape and mine goes in one big curve. He said that this could be
caused by the muscle spasms and the wreck but without previous x-rays they could
not be sure. My rheumy took x-rays over a year ago so they are going to get
together to do a comparison. I am not sure if scoliosis can be caused by
arthritis, on it's own or if this a temporary condition caused by the wreck.
Does anyone have any experience with this? This really scares me since I had a
friend in elementary school with scoliosis and she was in a wheel chair. He
said I only had a mild case but I didn't know if this is something that can
worsen.
Also, my new PCP is great! He was very helpful. He told me to count my
blessings and that I was very lucky not to be seriously hurt. He was very
angered when I told him I lost my temp. position and he said that some people
have no compassion. He told me not to worry about it because work is not the
most important thing in your life, yourself and family are. He also told me to
become my own best friend. I thought it was nice that he wanted to treat my
mind and my body. most physcians only focus on the one ailment. He also stated
that because I am on Enbrel that I need to take 1000mg of vitamin C every day,
regardless if I am sick or not. I would assume that would apply to all of us on
DMARDS. And, he gave me information on accupuncture. This is performed by a
physcian. He said it could help with the arthritis. I'll keep everyone posted
once I start. If anyone is interested in it I can scan it into my computer.
Leslie

In Today's Mass High Tech-
01/31/2003 10:28 AM
By Rodney Brown
Biogen Inc. of Cambridge today announced that the Food and Drug
Administration has approved the drug alefacept, under the brand name
Amevive, for the treatment of adult patients with moderate-to-severe
chronic plaque psoriasis.
Psoriasis, an autoimmune skin disease, affects about 80 million people
worldwide and 4.5 million adults in the United States.
Amevive will be a prescription drug delivered by injection and must be
administered under the supervision of a physician. The company says
Amevive is a systemic therapy that works by helping to rebalance the
overactive T cells in the immune system that cause psoriasis.
"The availability of Amevive is important because it offers a unique
treatment option with the potential to provide patients with months
free from both psoriasis and its treatment, said James C. Mullen,
Biogen's chairman and CEO, in a statement. For the last 15 years,
Biogen has committed itself to the research and development of Amevive.
We are proud to offer new hope for people with moderate-to-severe
psoriasis."

All the talk of marijuana, prompts me to add that many of us take "legal"
narcotic drugs for severe pain and they can be medically monitored. Is the
problem that these do not work for some people ?
When I was hospitalized and placed on infusion of morphine and ketamine, this
was very strictly monitored. Sneaking a look at my records on the end of the
bed, there was a form for the administering of narcotic substances
subcutaneously which had been approved by government representatives. At
frequent intervals, the consumption in the syringe and a check of the Gravesby
pump administering it had to be recorded by a nurse and also full obs on me. A
bit of a nuisance during the night when they came with a flash light and woke me
for checks and obs. A new syringe would not be prepared until the previous one
was on point of empty. However, I appreciated this attention as safe-practice
procedure and also for medical monitoring of oral narcotics. You cannot get the
same guarantee from illegal narcotics.
Regards, Gordon

Leslie,
Thank goodness you were not seriously injured in the car pile-up. I and others
know how "rock bottom" feels (read my magazine article). Taking control is
important, do not let your condition and situation "steam roll" you. Have faith
and say that "I will come through this". Please seek personal help through
counselling if you can. I would recommend contacting your local Arthritis
Foundation as it will probably have self-help management programmes such as
assisted me greatly.
If you would like to talk it out, feel free to contact me at
geliott@...
We are there,
Gordon

Susan, you are so close!!! I have a good friend that works there!

oh no..... I'm glad you're ok though....it will get better!!!
-

I need to move to Australia!!! no kiding my all time wish to visit
-

Leslie,
I agree that it does say that in the kids section too, but it also says it in
step 2 of the adult section... it also says it 2 more times in the pamphlet
(including the kids section) I believe in section two it was at the top
right. I will read it again and see if I am missing something.
Tiffany
I

Hi Janet,
Although pregnancy can put many people already diagnosed with PA into
remission... it also can cause those who have never had P or PA to all of the
sudden break out with these conditions. I have heard it happen both ways. (many
women get RA after pregnancy too) I think people have a dormant gene that any
new level of stress, hormone decrease/increase, or for that matter any change in
the makeup of your body can cause the gene to activate. Just my opinion!
Tiffany
In a message dated 1/30/2003 10:37:53 PM Eastern Standard Time, fam24 writes:

I completely agree with what you said below. That is the only way a person feels
complete, and a relationship is fulfilling and long lasting. Like I said before,
find stuff YOU love to do, and are good at.. FIND YOURSELF (which takes some
serious work).. and the rest WILL fall into place.
In a message dated 1/30/2003 7:18:19 PM Eastern Standard Time, mika93@...
writes:

Excellent article, Gordon!
Penny the mostly-lurker

just wanted to put my 2cents worth in on a part of the newsletter
talking about occupations and arthritis. i was a bank teller for
10 years, no dr has ever mentioned carpal tunnel, and i am not sure
exactly of the symptons. my hands do have the worst of my arth.
they have no strength at all, the joints are swollen and even my
wrist bone sticks out. in the morning my hands ache so bad. i have
to say the arth. is controlled elsewhere.
re: poll on locations, i am in ohio, about 30 miles north of dayton
in a tiny village called fletcher. we have about 500 people, quiet
little place. my sister who lives in roswell, ga says i live in the
middle of a cornfield.:) we like it
susan in ohio

If I could actually get some sleep...it would be nice...but then too if i'm pron
too long my joints set up like concrete. Even on a trip, riding in the van, i
have to get out and walk or move around, otherwise the others have gone to th
bathroom and i'm still standing there trying to get things to work. Aren't you
on Vioxx on a reg. basis, not just when you need one?
Donna

Dear Members,
I issued the second newsletter for January just a few moments ago.
My wife and I are going to be taking the month of February off, for some much
needed rest and relaxation. I will not be writing newsletters for the month
of February. However, I may be able to slip in one or two extras during the
remainder of the year. My goal has been 2 newsletters per month since I
started in September of 2001.
I will resume publishing the newsletter in the early part of March. I am sure
that the flood of medical research e-mails awaiting me will be unbelievable.
On another subject, thanks to the sixteen members who responded to my
questions about the mixture of methotrexate and sunlight. All you people are
really great.
Good Health to all,
Jack Nicholas
Newsletter Editor
Cornishpro@...

My Rheum told me yesterday that you can stay on Enbrel until the day you find
out you are pregnant, and that he has even had pregnant women stay ON Enbrel
during their whole pregnant with NO PROBLEMS to the child or mother. (Of course
this is only in extreme cases)
That's a huge difference from MTX!
Tiffany
In a message dated 1/30/2003 10:39:22 PM Eastern Standard Time,
joerock@... writes:

PSORIATIC ARTHRITIS NEWS AND VIEWS
VOL. 3 ISSUE 2 January 31, 2003
PSORIATIC ARTHRITIS MEDICAL NEWS
GORDON ELIOTT AND THE ARTHRITIS FOUNDATION OF AUSTRALIA
Our very own Gordon Eliott was invited to write an article that describes his
own personal account of what it is like to live with Psoriatic Arthritis.
Gordon's superb story is intended to help people understand the suffering and
immense cost of PA, while giving encouragement and support to others who feel
alone in their fight against this chronic disease.
Gordon's article was just published in the summer (yes, its summer in
Australia.) issue of "ARTHRITIS ACTION", the official magazine of the
Arthritis Foundation of Australia. Ron Dotson has posted pictures from the

There are already more things than Enbrel on the
market now.
I would go for Enbrel.
Next there is Humira.
I am sure there will be several more to follow.
Good Luck,
Scott in Atlanta, GA

=====
Scott in Atlanta, GA

I usually respond to each post individually but because Ive been away for a
while I have a bunch of them I want to respond to so I lumped them together
this time. Orin
In a message dated 1/25/03 3:27:53 AM Central Standard Time, PA@...
writes:
Did I hear "Petitition drive"? I will sign.
Did the P that has gone away leave any scarring?
Tiffany
When psor clears the skin or nails will return to perfectly normal. Some
topical meds cause a temporary affect the amount of tan on a cleared spot
usually toward lighter but I have heard of darker skinned persons who had
hyper-pigmentation as well. If you develop an infection as result of broken
skin of psor that could cause permanent scarring which is probably more
likely with the pustular form of psor. Also excessive use of topical steroids
can cause stretch marks due to thinning of the skin which can leave a
permanent scar if they are deep enough.
sportslinq wrote:
I also have to agree. I am 31, diagnosed at 22 years old. I have days that
I feel like my 97 year old grandmother gets around better than me
I agree with that. My 68 year old dad who survived severe polio as a child
can now outwork me. I'm glad that he is able to do as much as he can but it
breaks my heart and pisses me off that I cant keep up with the old man. And I
recently spent a few days with an old friend who eluded to the fact that I'm
lazy cause I bailed out on carrying firewood after a few minutes and even
that made me sore as hell and I'm still recovering. He knows how hard I have
always worked before this crap hit me!
jays25@... wrote:
~~~Is this the price one has to pay for being honest and having Psoariasis
?~~~
~~~What is the Medical Fraternity of the world doing when so many lives
r getting affected with it around the world....doctors say "the real
cause is not yet known"....I cant digest that ...with so many
sufferers around the world is it difficult to find the root cause ?~~~
Hi Jay I empathize with your situation and wish to extend you a gesture of
friendship and compassion during this troubled time you are going through.
There is no way to know what might have been had you chosen to delay exposing
the truth but I suspect the result would have been much the same or even
worse if you had not been upfront about your situation. I hope that you can
soon find the fortitude to put all things into perspective and move on with
life in spite of the hardships. Hang in there and be all that you can.
On the on/off nature of your PA symptoms the description you give is
certainly not unusual. That sounds much like my own PA experience. I just
wish my skin would remit once in a while. It has been quite constant in
comparasin to some others. I would say yes we should consider ourselves lucky
anytime we are free of symptoms.
The advice of excersize for joints effected with PA is appropriate. I dont
think you can "keep away" PA with excercize but you may be able to limit some
of the effects. This seems to be particularly true of spine and shoulders to
prevent looses in range of motion. As with many reccomendations with PA,
moderation should be emphasized.
mika93
I'd be recommending it (medical marijuana use) all the time on this group
since it
addresses so many of the problems people ask for help dealing
with here - nausea, lack of appetite, fatigue, insomnia,
depression - all cured by one magick herb.
Thanks for listening to my rant. Now I'll just sit back and wait for
the black helicopters ;)
Ed. Note:
~~~I'm too afraid to smoke pot because the government could confiscate my
home and toss me out on the street for merely smoking a single "joint" from a
plant I could grow in my own garden if it weren't illegal.~~~
~~~I am a long time member of the National Organization for the Reform of
Marijuana Laws (NORML) and the Marijuana Policy Project (MPP) and I urge
everyone so inclined to join these organizations in order to make our voices
heard.~~~ -- Ron
I would argue that self medication with alcohol is much more hazardous to
society than marajuana and less effective for any legitimate purpose as well.
I think we would be better off to make pot legal and alcohol illegal. I
will sign that petition as well.
Ed. Note: Welcome back Orin - where have you been? Off to do some marketing
for the timer power system you build? If so, how did it go (maybe you should
respond privately to that question). Actually I'm on Remicade. Dovonex never
did a thing for me, so don't feel bad if you can't afford it. Vaseline always
did just as much good as Dovonex - for me at least. Ron
Thanks on the heads up on the dovonex. It has worked somewhat for a lot of
people so I feel like I should at least give it a shot. The betamethasone
has helped but apparently isnt gonna cause clearance and I hope it doesnt
rebound again but desperate times call for desperate measures. At least it
relieved the discomfort long enough to pull my head out of my *ss and and get
something working.
(Of course I wouldn't get really close to someone who looked seriously ill.)
Peggy in
Sunny Florida (for the winter)
Thats something to consider when thinking about how others view psor.
On reading many posts about MTX and sunlight I had a thought. Apparently MTX
is a photosensitizer (maybe not) as is coal tar and psoralen. And according
to Steve Thatcher we can add sulfasalazine and arava to that list. Dovonex is
a vitamin D analog and vitamin D is produced in the skin upon exposure to UV
light. Is it really just an increased response to light that helps the body
to produce vitamin D or some other chemical?
Are all psor meds photosensitizers?
And yes Dovonex is a vitamin D analog rather than E but the claims about
using vit e to limit scar formation are apparently true.
Orin

I had a friend with the same "problem". He felt like a little
isolated, being the only male living with 4 females. He bought a
male dog. Strangely, it seemed to make him feel better.

I don't think that Arava is considered a "easy on the body" drug. My old
rheumatologist when she thought that I just had osteo (she was wrong but
that is another story) wouldn't let me continue Arave because it could do
"bad things to my body." It is a drug that you have to watch liver enzymes
with just like Methotrexate. Also it can cause birth defects and if taking
it you need a wash out before trying to get pregnant. It can stay in the
body for a very long time. Anne

In a message dated 1/30/2003 12:33:20 PM Eastern Standard Time,
leslieiansa@... writes:
Leslie,
I sympathize with you because I have all the same pains. I just lost my job
after 16 years. It was a mutual decision since my knee didn't heal right
after surgery. Doesn't the Embrel help? I am about to start it.

Hi all!
I am not sure if the following info has been relayed yet. I have been
very busy and have not had time to read each and every post in full.
Like many of you, I am also wanting to get pregnant soon and am
worried about the mtx and enbrel. I found some info on the
HealthTalk.com website....
"The other thing is that a drug such as etanercept (Enbrel) has a
half-life of 70 hours, so if you stop the drug it's out of your
system - although it may still be in the joints - but it's really out
of your system very quickly. Remicade (infliximab) has a half-life of
about two months, so that's a little bit longer but still relatively
short."
Hope this helps some of you! If certainly makes me feel a lot better
about gettin gpregnant. The mtx still worries me, but I will make
sure I am off of that one for at least 6 months.
Happy Baby Making!!
Meredith

I don't want to scare anyone trying to get pregnant , however my problem all
started when I was pregnant with my daughter. She is now 17 and in the weeks
following my delivery is when I broke out with psoriasis and developed
intense joint pain. I had a very hard pregnancy and also developed an
auto-immune thyroid condition called Hashimotos thyroiditis for which I now
take synthroid for. All I can say is that pregnancy and me do not agree.
Janet

yes it is a vitamin D derivative

I saw a chiropractor regularly during all of my pregnancies. It is only
natural that your spine could use some adjustments as the abdomen carries so
much more of your body weight.
Ks Di

It is an easy (if you aren't allergic to Sulfur) on the body DMARD that only
works in about 1/3rd of PA sufferers.
In a message dated 1/30/2003 5:54:40 PM Eastern Standard Time,
sathomas55@... writes:

I was driving to work this morning and was involved in a 4 car pile up on the
freeway. I was car #3. All of the other vehicles were big extended cab trucks
so my little saturn took all the impact. The car that rear-ended me hit with
such force that my car's front end was wedged underneath the car in front of me.
I know that I am very lucky to not be seriously injured. I am very grateful for
that but......I can't believe how incredibly unlucky I am. Now my back and neck
are excrutiating. My car is in the shop. Fortunately I have a rental. I am
not sure if it can be saved though. I called the agency that got me my new job
(it's temp to perm) first thing after the wreck to tell them what happened. It
was afternoon by the time I got home and called them to tell them what the Dr.
had said. I have to go to phys. therapy 3 x a week for 6 weeks. He also said
to stay home today and tomorrow. When I told the recruiter from the agency she
told me that they already sent someone else on this assignment and to call them
when I was available. So now I have no job, no money, in one month no insurance
and I am much worse physically and mentally. Not to mention that my insurance
will go up for hitting the car in front of me. I just hope I have no problems
with the guy who hit me. Oh, and the icing on the cake - the 1 1/2 hour I spent
outside in the cold morning has gotten me sick! Sorry to rant but I am in a
really sad place today. I guess this is how rock bottom must feel.
Leslie

Hi all! Just thought I'd let everyone know that we're having another
girl(#4!)and every thing is going along well with her. My poor
husband was hoping for a boy, so he wouldn't be the only man in the
house. He lives with 5 now, soon to be 6 females. There's me (w/PA),
my mom (w/OA), and 3 daughters, one of which is hitting puberty, all
these people around and no one to watch football with! :):)
By the way my back is getting worse so I spoke with a chiropactor
and he thinks he can help with the pain. I hope he can as I am
really needing relief. I will try to keep you guys posted on how it
works.
--Merribeth

I was suffering a while back from fatigue and irratability and my Dr
suggested Folic acid. I take it once a day (prescription strength)
and it has really helped.

Hi Merribeth,
I was told that Dovonex is made from Vitamin D (not E).
Sharon

In <00d701c2c7f6$5ebd6d30$3ca060cc@maude
Even better is to avoid reposting EVERY single thing that the person said.
Just taking the few lines that is being responded to, to give context, is
really all that's needed.

One thing I always remember is that looks are the universal equalizer. We all
lose them at some point in our life... it's just inevitable.
BUT... there are things you don't lose. What do you find great about you?
Yes, this takes a little of a narcistic moment, but there must be something
about you that you love that has nothing to do with your appearance. For me
it is the fact that I am an incredible singer and entertainer, and I am a
successful business woman. These are things that the loss of look or deformed
joints cannot take from me. When you go out on a date and you find yourself
excited about someone, make sure you think about all of the great things
about you that you want this person to know about you. If you have a great
education, let them know that. If you have a special talent, somehow sneak
that in during the first few dates. I love taking a date to a bar where they
have karaoke and bringing the house down. On about my 3rd date with my
current boyfriend I told him I could sing and we went to a local bar. I ended
up getting several standing ovations that night... he looked at me at the end
of the night and said "man was I proud you were my girl tonight". It was just
very cool... and it wasn't about looks or what disease I have and don't
have... it was all about the fact that he was impressed with the person that
I am. A lot of it is about loving yourself with this disease, which does take
some time to do. Find something you excel in and use that to find yourself
again. There is nothing you can do about having this disease... it is not
your fault that you have P or PA, and any good person would realize that and
not hold it against you. You just must find other ways to make yourself feel
good and whole. It truly is how you feel about yourself. I certainly work on
the things I am good at, because those things make me love me, and help me
feel very worthy of receiving love...
Sorry to go on so much about this, but I know how tough it can be to date
with all of this going on!
Tiffany
For those of you who got diagnosed with p and pa
before meeting your life partner: how was the dating
process? Did you feel self conscious about people
finding out about your condition? Did you fear
rejection?

Hey how are you? I hope your absence was a good thing for you, I did
wonder where you were at. Anyhow I wanted to let you know what my
dermy told me about devonex. I believe that was the one he told why
it was so expensive($125 a tube) . He told me that it is pure
vitimin E extract, the cost comes from how they process it, it stuck
out because, when I was younger I had a wreck that really did some
damage to my face, they were talking pastic surgery, and the doc had
get some vit. E capsules to prevent scarring. They came in a bottle
for about $2, anyhow these capsules were filled with oil and my mom
would put this oil on the cuts. I have very little scarring as a
result. SO I remember (when I was at the dermy's office) thinking
vitimin E is so cheap, that if the insurance didn't cover it, I
wasn't buying it(the devonex). I can't say the results will be as
fast but maybe you could mix this oil with some vaseline, or use it
by itself until you can get the devonex. Hope this helps!
--Merribeth

Jack, I take mtx and live in sub-tropical Queensland with plenty of strong
sunlight (it is known as the melanoma state). I have not had any sunburn
problems even though most of the year around a knitted shirt, shorts, sandals,
and of course a hat, is all you wear. If I am in sunlight for a long period
(such as on my scooter going to the shops), I always use 30+ sunscreen.
Hope this helps,
Regards, Gordon

Hi Jack,
I live in Adelaide South Australia where we regularly get sunny very hot days
in Summer. Recently we have had a spate of days over 40 Celcius and last
Saturday it was 48 where we live so we went down to the beach where it was a
"cool" 36 Celcius.
I've been on and off oral MTX for about 10 years. Recently after 2 1/2 years
on Arava I'switched to injectable MTX.
For me both Arava and MTX( and Sulfasalazine for that matter)gave me a slightly
redder appearence in the sun than normal. However I wouldn't say that I burned
any more easily. Conclusion: Non of the DMARDS produced any real increase in
the degree of burning. BUt as they say everyone is different.
Hope this helps.
Cheers,
Steve
[Ed. Note: Hi Steven. You wouldn't happen to be the same Steven
Thatcher/Thrasher that's in the "Help Desk" recording on my web site would you?
The recording is at: http://ron.dotson.org/images/helpdesk.wav ;-) Ron]
Message: 25
Date: Wed, 29 Jan 2003 17:19:04 EST
From: Cornishpro@...
Subject: Methotrexate and Sunlight
This is your friendly ole Newsletter Editor Jack Nicholas seeking some advice
from our membership.
I have been on 10mg/week of methotrexate for 12 weeks now, and I already am
experiencing an improvement in my arthritis, especially in the morning.
I will be leaving for warmer and sunnier places next week and have a concern
about methotrexate and sunlight.

In a message dated 1/29/03 2:51:49 PM Eastern Standard Time,
marka@... writes:
I am personally concerned about exhausting my resources at such an early age
(28). I am concerned about possible irreversible nervous system side effects.
(although I realize these are rare.. but when they happen, they are
irreversible) I am concerned about the fact that I don't have any kids, and
if I do have irreversible side effects on this drug I might never have kids.
I am concerned that I am not in enough pain right now to start on such a
severe med. My P is bad right now, and I am currently on Sulfasalazine (very
low dose - 2 tabs a day) and Celebrex (400 mgs a day). I feel OK, but I still
have pain in my shoulder, hands and feet (and small visible deformities
happening, which X-rays do not confirm)... but it seems to be better some
days and worse others... most days I can function through the pain. I am
nervous that I have not tried hard enough to get my body healthy on my own by
eating right and exercising daily, and if I were to do that my body might be
able to fight this without drugs. (yes, I know how unrealistic this thought
might be). I am nervous that if I start this drug I will never be able to go
off of it again... but I have that same fear with my current drugs. I am
scared if I ever do go off of Enbrel that the arthritis might attack even
harder than before I went on it.
Benefits - It would probably help both my P and PA.
There is a possibility that I can go into remission and get off of this drug.
It will make me more able to work on getting my body stronger, so I might be
able to deal with this disease better.
I don't really know which outweighs which. I am sure those trying to decide
on Enbrel understand these fears/benefits?
Tiffany

CT Scan = CAT Scan = Computed Axial Tomography or Computed
Tomography. It's a computerized x-ray machine that produces high
resolution x-rays on a computer. I had one recently for something
else. It's about as easy as an x-ray (except you have to hold your
breath longer).

Jack:
I have never gotten burned and am on 12.5 MTX every week for about 2 years.
I have been a sun worshiper all my life and was worried when I read that MTX
and sunlight don't mix. The sun definately has always helped my P. Last
summer at one of my Remicade infusions one of the girls asked me how I get
so tanned and if the MTX doesn't make me burn. It hasn't bothered me a bit.
And I don't use sun block. I use baby oil and iodine.
Have fun in the warmer sunnier weather. Wish I was going with you. Low
tonight in Northern IN is supposed to be 2.
Jeanne

Hi there, my PA is now just at the point where I need to start on SOMETHING.
All I am hearing about MTX is scary, and my biggest problem is fatigue, so I
think that's out. My doc thinks Enbrel is too risky for me, and wants me to
try something that has been around longer. For those of you taking Remicade,
what has your experience been like? Does it help with fatigue? Does it make
you tired? Would appreciate any input.
Thanks,
Rachel
[Ed. Note: I've had two infusions of Remicade so far, and am due for my third
tomorrow (Friday). For the first couple of weeks after an infusion, I feel great
- it's almost as good as a low dose of Prednisone. After the first couple of
weeks, the effect wears off however and I'm back to pretty much where I was
before - although some of my psoriasis patches have begun to clear up and I
think I feel slightly better overall. Right now I'm in the "loading dose"
period, so it's too early for my to make any judgements about Remicade, but so
far I've had no negative experiences with it at all. I still get tired
frequently and haven't noticed much effect on that. Ron]

Cat Scan--although that is also a term for a scientific acronym. I just had
one for my headaches. No big deal. It just does a better job of
interpreting a situation.
You are not in trouble--you are closer to treating the problem. Relax--help
in on the way!!!
Ks Di

The thing I always remind myself about reading those mtx
warnings is that people with cancer take this drug at much much
higher doses than we do, yet we get the same warnings. So I
guess the key is to just talk with your doc.
I have a hard time imagining you'd have a problem with 30 spf!
But I'm no doctor (insert standard disclaimer here).
I'm in Seattle - no worries about too much sun ;) I was
concerned about how the warnings say mtx makes people
bruise easier, but that hasn't been a problem, and I have lots of
opportunities to bruise. I've been on 10mg/week more or less
for about 2.5 years.
Have fun in the sun!

I think you are lucky!!! Perhaps I was also. I went through periods of
pain: shoulder, hip, heel. They always pained me for a period of time and
then went away. I figure now that those must have been mini flairs. I have
had constant pain for over three years now. It is not always in the same
place--but constant pain. I have avoided MTX. Maybe you make a good case
for those writing in suggesting aggressive treatment from the beginning. I
have had P since college, mini flairs starting in my mid-20's, and constant
since the age of 43. I count myself very lucky to have had my children
before it hit me this hard. I feel so sorry for those trying to have
babies. Although I suffered years of infertility--it had nothing to do with
PA and the associated drugs.
Ks Di

A CT is a scan. It is a more comprehensive x-ray that lets them see a
little bit more. Don't worry yourself sick. I had a phone call that said
to go to see an ortho very quickly after I had an x-ray of my knee and it
turned up to be that the worrisome x-ray was just taken at a little
different angle and looked bad but wasn't. I am not saying that this will
happen to you. Don't worry too much. Good luck. Anne
[Ed. Note: A CT scan is Computed Tomography (CT) imaging, also known as "CAT
scanning." Although it uses X-rays, it is able to image a combination of soft
tissue, bone, and blood vessels instead of just bone as regular X-Rays do. There
is an interesting web page about it at: http://imaginis.com/ct-scan/ Ron]

Hi,
I was wondering if there is anyone out there who has made the switch
from the Remicade treatments to the Enebrel shots? My doctor
informed me that the Enebrel shots are now available and that it is
my decision if I would like to change treatments. I am considering
the shots because that would save me from having to spend 4 to 5 hrs.
at the hospital for a Remicade treatment every 8 weeks. I just
wasn't sure if I would have the same results that I am having with
the Remicade treatments???
Thank you,
June
[Ed. Note: I can't imagine why it should take 4 to 5 hours for a Remicade
infusion??? It only takes about 2 hours for the technician to infuse four vials
of Remicade into me. There are usually a few others getting the infusion in the
same room with me, and we are all finished in about two hours. Ask them to speed
up the drip. Ron]

In a message dated 1/26/03 4:08:18 AM Central Standard Time,
marka@... writes:
I'm back anyone miss me? Apparently not cause I have 500+ mails from
various psor related message boards to go through ha ha I wasnt gonna respond
to this post because the enbrel certainly should have more of a positive
result on the psor which may allow for elimination of coal tar usage while
maintaining the psor. You (Ron) mentioned that your lower legs are slow to
respond. Im using topical steroid and soon adding dovonex if I can scrape up
some change to fill the prescription and noted that my lower legs havent
responded nearly as well as other places. Anyone else have the same
experience? Orin
[Ed. Note: Welcome back Orin - where have you been? Off to do some marketing
for the timer power system you build? If so, how did it go (maybe you should
respond privately to that question). Actually I'm on Remicade. Dovonex never did
a thing for me, so don't feel bad if you can't afford it. Vaseline always did
just as much good as Dovonex - for me at least. Ron]

I believe that attitude is everything. Well... I'm lucky because I
only have small p spots on my body, most of the worst is hidden
on my scalp (though I am self conscious about my "dandruff").
So I can't speak about that. But as far as the pa is concerned,
I'm very matter-of-fact about it.
For example, I was sitting with a new guy this past weekend who
was looking at my feet and said "do you wear shoes that are too
tight?" cause the bottom joints of my big toes stick out to the
side. I said "naaah, that's just from my arthritis" (which he
already knew about). I was a little self conscious, but hey, it's not
like everyone without pa has beautiful feet, and at least I have an
excuse! hee hee hee.
Really though, when I meet someone, whether or not there's
romantic interest my arthritis usually comes up pretty quickly. It's
either during a meal: "I don't eat nightshades or citrus" "why?"
"they aggravate my arthritis..." or it's when talking about
recreation "no I don't do any high impact sports" sort of thing. I
figure, when you're connecting with someone it's because you
share common interests, so our limitations really aren't very
important. Unless the person you're getting to know feels that
they can't date you unless you participate with them in *all* their
interests... but I don't like people like that so it doesn't come up
for me.
I'm a true believer in self confidence and attitude. If you feel good
about who you are then the people around you feel good, if you
consider yourself to be attractive and desirable then others will
too. Sometimes it's hard, even little things like I don't like having
to tell someone to walk slower cause I can't keep up, but I just
maintain the attitude that it's no big deal. Don't worry about
people rejecting you - *you* have power, you might decide to
reject them. You can even treat the pa or p like a test to weed out
the losers who can't see past it - wouldn't you rather know right
away that someone is shallow, or at best, ok but incompatible
with you?
Also, I'm a pretty independent woman and somewhat of a radical
feminist and I think my male friends and lovers really enjoy that
they get to do 'traditional' manly things for me, like work around
the house or carrying a 20 lb bag of kitty litter from the store or
whatever. What's worse - or even harder for me - is that I'm an
*engineer*. I can fix my own damn plumbing! Well, I could, if I
didn't have arthritis... so once I got over the need to prove myself,
I've been enjoying getting people to do stuff for me. I let myself
feel like a spoiled rather than a helpless princess. It's attitude -
"I'll let you take care of me sometimes" rather than "I can't
function without you".
Sorry about the super long response. Let me know if I should
post shorter messages in the future.
[Ed. Note: mikea93, long well thought out messages are heartily welcomed! We get
far too many unnecessary postings of the "Me to" variety that have no
information content whatever. There is no upper limit (that I'm aware of) on the
length of messages that can be posted here, nor on the amount of messages we can
have in our archives, so please feel free to write a novel if you wish. Ah, a
lady engineer - where were you when I was younger and unmarried! (I'm an
engineer too). Ron]

Ron - you are something... Linda J

Michelle,
I think I will start taking it on Friday nights. Last Saturday was horrible. I
felt really bad after it was in my system.
Robin, Penny, Chance, Heidi, Heather and Hope (Florida)
http://www.geocities.com/goldens4life2000/index.html

I was told only 3 injections per year (that was in my
hips), but in 2001, I wound up with 5 injections.
I did not seem to cause any problems. Although they
only lasted a couple of weeks each time.

=====
Scott in Atlanta, GA

I hated dating...mostly because of how horrible my psoriasis always have looked.
My legs are covered, hands and wrist area and buttocks. And occasionally I end
up with a few on my face. I hate it!!
Robin, Penny, Chance, Heidi, Heather and Hope (Florida)
http://www.geocities.com/goldens4life2000/index.html

I recently had a cortisone injection into the joint closer to hand
from the knuckle. The rheumy told me that there was a lifetime limit
of two injections into that joint. I imagine the answer is similar
to a knuckle.

I am so sorry for your loss. As much as it hurts, I can not help
feeling that it worked out for the best. You may have faced a
lifetime of resentment from your fiancée's family if you had not
disclosed this before. The prejudice you experienced is clearly
their loss too. They may not feel it, but you need to believe it.
You sound like a decent and moral person. You made the best moral
judgement you could. This is all divinity can ask. Nothing matters
more in marriage than trust. It has to be there from the beginning.
I believe, you did the right thing.
I am 51, so not your age. I have been diagnosed with PA for 10
years. I to am on a good medication and exercise regiment for me and
my P and PA are both under reasonable control. I am physically
active.
My "problem area" changes from time to time. My left hip and SI
joint have been a problem for close to a year. I went to physical
therapy, which helped. Some days are better than others are. Even
on my worst day, my PA did not prevent physical relations. Some days
a minor adjustment in what we were doing may have been needed, but
not so that my wife thought much about it.
You said that you're P has become worse since all this happened. It
is well known that stress will aggravate P. I know it would be easy
for me to say that you should not let this bother you, but I know it
does. I suggest that you resolve yourself to an understanding that
you are a person suitable for marriage and that the loss is also to
your ex fiancée and her family. They lost an honest and good person.
Also physical exercise helps reduce stress and could help reduce
your P.
Good luck. You will be in my thoughts.

Hi Jay,
I am really glad you posted this question and am looking forward to
replies. I had my first attack of PA last year at about this time.
In fact this time last year, I was using a cane to walk. Every joint
in my body including my ears and jaws were hurting. I suspected it
was PA thanks to my cardiologist, but it took until April before my
rheumy made the diagnoses. MTX with NSAIDs worked almost immediately
(thank God). Now, I have only little temporary reminders of the pain
of last year. My mind some times tells me I am cured and do not need
the medications. Last week, in fact, I neglected to take my NSAID
for 3 consecutive days. Sure enough, my knees started hurting again.
Taking the NSAID fixed it. One thing that has never gone away is my
Psoriasis. I have been considering Enbrel or Remicade just for the P.
Steve

Dear friends,
It has been my experience and my doctor advised me the first time I took
methotrexate, that it can take six to eight weeks to work for the first time.
In addition, you may need a higher dose than the initial starting dose- so I
would perhaps press for a higher dose rather than giving up entirely on it
when you have time invested in it already. As far as nausea goes, remember
to ask for a prescription for Zofran. It specifically works for chemo drugs.
If you take it before your metho and keep taking it for 24-36 hours you
should not have any nausea and vomiting. The fatigue is a different story. I
personally was advised by friends on this board to take my metho with dinner
Friday night (also the Zofran!) that way I could sleep off the sometimes
severe fatigue I would get with higher doses of metho.
Good Luck to you.
Michelle
group founder

The sure fire way that my feet and hands healed was by first putting
antibiotic cream (my doc gives me Bactroban cream) in the cracks, and then
putting a steroid cream on top (My doc currently has me using psorcon cream)
Then I occlude it with a bandaid and sock if possible (if my foot). Doing this
at bedtime a few nights in a row and the am as well if possible- gave me a
perfectly healed foot/hand.
Hope it works for you. The antibiotic cream is the trick. If you have
something fungal going on you would need something like Spectrazole cream (a
prescription) instead of antibiotic cream, otherwise all should heal up
beautifully
Michelle.

For those of you who got diagnosed with p and pa
before meeting your life partner: how was the dating
process? Did you feel self conscious about people
finding out about your condition? Did you fear
rejection?
Ps: It may seem a weird question, but living in Miami
where everybody is so into looks, my social life has
been hell...

Well, my pa started when I was 20, now I'm 28. Only 3
years ago I started Enbrel and the demage is done
already, althoughy the pain seems more controlled. I
wish I took it together with mtx. from the begining, I
wouldn't have my hands deformed like that. It surely
impared my social life, since I don't like peolple
knowing about my condition and feeling sorry for me
(...so young...).Did any of you had/have social
problems because of that?
--- "jimmared <jimma1979@...

Hi Kim and Jenn:
I haven't had to transition off enbrel or methotrexate because I've
been trying to conceive for the past 2.5 years and was diagnosed with
my 1st automimmune disease about 2 years ago. My rheumatologist
wanted me to go on MTX but I told him that I didn't want to start it
until after I give birth (whenever that will happen!). He completely
understands, in part because his PA has been trying to conceive for
years too.
I'm not going to say that I'm not in pain. Sometimes I'm in
considerable pain. Anti-inflammatories, especially Cox-2 inhibitors
like Vioxx, can interfere with ovulation, implantation, and placental
development (there's tons of evidence for this in mice and the
evidence in humans is growing--I can dig up the references if you're
interested). Ibuprofen is not supposed to interfere as much with
conception but it makes my lips swell up, which is pretty scary.
My rheumy has OK'd Ultracet for me while I try to conceive. It
definitely helps the pain, though it doesn't eliminate it. I could be
on Plaquenil and then go off of it right after I know I'm pregnant,
but I'm just sticking with the Ultracet for now. I could be on
prednisone too, but I was on that for over a year and I really, really
don't want to be on it again. I gained 50 lbs while on pred, and have
lost 30 of those lbs so far in the year that I've been off pred.
I guess the bottom line is that it is not easy to try to get pregnant
and have PA, but it can be done! While you're trying to conceive,
time will be of the essence so that you can shorten the time you'll be
off MTX and Enbrel. I would suggest seeing a Reproductive
Endocrinologist right from the start. He/she can possibly help you to
conceive sooner. That might seem a little extreme, but I'll try
anything to reduce the amount of time I'm in pain. If your Rheumy
hasn't check for anti-phospholipid antibodies, you'll want to have
that checked too because it can increase the likelihood of
miscarriage. Fortunately, there are treatments to reduce this
likelihood if you do test positive.
Despite being in pain, I figure it will all be worth it if and when I
have a baby. I'm 38 now and have made a pact with myself that I will
continue to try until I'm 40, at which point we'll adopt. If that
happens, the pain will have still been worth it because I'll know that
I've done everything I can to try to have a biological child.
If you do decide to try to get pregnant, I wish you the best of luck!!
Karen

To everyone interested in the Enbrel needle size discussion:
When you open the Enbrel box that contains your Enbrel injections packs, you
will see a form that says "How to Use Enbrel".
When you go to step 2, it specifically says use ONLY a 25 or 27 gauge needle.
It does not give the reason why, but it does stress this several times
thr