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Remicade Success Story Hi
Everyone: If you remember
back in the December 2000 Briefing, Ed mentioned his worry that
the best and brand new treatments for P will be available only to the ones
most affected and the ones who have access to really good health care. Well,
I'm afraid he may be correct, at least for the short term... I
am on Remicade, but I am using it off-label specifically for P.
I do not have Rheumatoid Arthritis or Crohn's disease.
I have one nasty case of P (Erythrodemic Multiform P, or EM, is
also Extra Misery).
Now I realize that there are some of you out there that have had it
much longer than I have, but mine came up like gangbusters 18 months ago,
and I have been going through hell ever since. It
started off with an upper respiratory infection that went to guttate.
Then, it went straight from guttate to generalized pustular and
erythrodermic multiform P in about 8 weeks.
I got it EVERYWHERE -
including in my ears, in my navel, in my private parts, as well as my
intragluteal fold. It was in
my hands and my body was in so much pain didn't know if I had psoriatic
arthritis or if my skin was too crunchy to move. I would lay on the couch all day, and plan getting up around
potty breaks and getting glasses of water. I
was quickly moved up the "doc chain" to the best derm team in
town - the derm assigned to my case advised systemics, but she did ask me
which one I wanted to try first. I
wanted the one that worked the fastest, so I chose Cyclosporine. After the
8 weeks, it didn't help any. In
fact, it continued to get worse. I
wanted to DIE. I'm not
kidding. She
then prescribed HUGE doses of Prednisone (up to 50 mg/day) just to keep me
from jumping off a cliff, and when we tapered the Prednisone too quickly I
caught the world's fastest EM rebound.
As you can imagine, the Cyclosporine and the Prednisone were doing
bad things to my blood pressure.
So, they had me start on both MTX and Accutane, while I was still
on Prednisone and Cyclosporine.
So, I was on HUGE doses of Cyclosporine, Prednisone, Methotrexate,
Accutane and Norvasc (for the high blood pressure brought about by the
meds) CONCURRENTLY. (Yes, at
the same time.) I did notice
that no one suggested using Soriatane.
I'm a married child-bearing age female, and she said that I may
want to have children in the future (if I made it to the future). Another
derm from the same team saw me and wrote a letter to my
employer and insurance agent, stating that I had one of the most
significant cases of P he has seen in his career (and this guy has been in
the biz for 20+ years). My
derm even talked to Dr. Mark Lebwohl at Mt. Sinai about me. So,
for a total period of 6 months, I went on disability for P. My derm gave me the opportunity to get a bed at the hospital,
but I wanted to stay at home. I
laid on the couch and watched my body waste away.
I was going to the derm about twice a week for a while. Getting to the derms office was a 24 hour affair including
the "de-flaking" cycle. I
couldn't get up off the couch without help. I
needed a stick to get about in the house.
I needed to be fed and cared for. My sister came from out of town
to take care of me, and she cried when I stepped out from my daily soak.
My husband was a strong and supportive soul, he was with me all the
way. He even installed a
satellite TV dish on the roof when they told us that I would be stuck in
the house for a long time. Eight
weeks after I started MTX, the
GP and the EMP finally waned, so they let me go back to work part time and
I started to taper off all the systemics except for MTX.
When I arrived back to work, I still was pretty weak and on plenty
of meds. It's been a
long and tiring road, dealing with fatigue and pain and the inability to
move. While the
pustular flares disappeared, I started to get plaques This
went on for another 10 months or so.
Earlier this year (2001), we considered new drugs, including
CellCept and Enbrel, and with a cooperation from a Rheumy (conveniently
across the hall from the Derm) we decided to go with Remicade. I
have had three infusions now, and I wish I could say that my P is
completely cleared, but it's "good enough!"
The improvements are amazing.
I feel like my old self again. I'd say I'm about 98% cleared 4
weeks after my 3rd infusion, but I still have small patches here and
there. I no longer use
topical creams, and my scalp P looks more like dandruff instead of
"domes." I have had
no side effects and I still do monthly labs to make sure all my blood
tests are OK. Now
the sad part. Before you go
running to your doc begging for Remicade, I need to say that it's NOT A
CURE. It's a palliative, like
MTX or Cyclosporine. Once the stuff wears off, it starts coming back. In fact, I still wonder if it's already starting to return as
I write this. Getting
approval for Remicade may not be easy.
Dosages are proportional to body weight. The nurse administering it
to me told me that it costs $1200-$1300 USD per 100 mg vial.
Let's say you need two or three of those per infusion, we're
talking between $3600-$3900 just for the meds.
This does not include the mixing at the pharmacy, the time for the
infusion room, doctor Why
the heck is it so expensive? Well,
not only are there the normal costs of bringing a new drug to market,
there are also additional costs with this new TYPE of drug.
It is a monoclonal antibody and it requires a whole
different process than previous drugs.
Monoclonal antibodies are an entire
new GENRE of medications — we're talking as new as antibiotics
were in the '40s. I
was sent a link that advertised Remicade for a much cheaper price — I
don't know what the nature of this website is so I didn't bother
investigating it further. ...here's
the link for anyone interested http://www.remicade-chrons-disease.com/ I
did talk to a woman that is involved in doing the studies for Remicade for
P. While she couldn't give me direct information, she did tell me that the
studies were doing well. Here's
a link to one of their articles: There
is also information about this at the NPF website: http://www.psoriasis.org/aad2001.htm In
addition, there are other monoclonal antibody therapies, for other
autoimmune diseases, such as Rituxan for Non-Hodgkin's Lymphoma, and ones
in the works include Xanelim for P and Xolair for asthma. It's
an exciting time for everyone with autoimmune diseases, so everyone just
hang on. And
before I bid you well, I need to say that ALL my doctors were remarkable,
especially my Derm and GP who are always open to new ideas.
They were always willing to listen to me, and they always supported
me no matter what I tried (even when I went to that Naturopathic doc for a
while, on that special diet). They care about me as a human being, as a
whole person. The staff at
both facilities are just as amazing.
I don't know how I lucked out, but I need to say that my docs (and
their supporting staff) are great. I
could write a whole other article on that.... I bid you well, ***** Ed’s
Response: It is wonderful to
hear that your experience with Remicade is going so well. We are all paying attention to progress with this new class
of drugs — monoclonal antibodies — and hoping for significant
widespread availability (meaning, at least in part, better
affordability). Reading
the story of your relatively short but extraordinarily intense P
experience is an eye-opening glimpse of P at its most hideous.
Your P — initially guttate — was triggered by a strep (or
strep-like) upper respiratory infection.
This is one of the most common triggers for P.... Perhaps I should
say it is one of the most well-defined triggers.
(There may be equally common or even more common triggers that are
less obvious, hence less well defined.)
The sudden severity of your P, including its metamorphosis from
guttate to plaque and multiform erythrodermic, is indicated by the barrage
of concurrent therapies your doctors prescribed.
Cyclosporine, Prednisone, Methotrexate, Accutane and Norvasc
CONCURRENTLY is unusual. That
pretty much covers our current arsenal of traditional systemic
palliatives. I’m sure your docs elected Accutane over Soriatane (both
are oral retinoids) because, while both pose threats to pregnancies,
Accutane is eliminated from the body much faster. Your
P has been debilitating. Most
flakers don’t have P this bad. The
extreme costs associated with Remicade infusion therapy (currently) need
to be weighed in consideration of the disabling nature of your P. You are happy to be 98% cleared with “small patches here
and there.” Flakers who
have never had more than a few small patches here and there are probably
not now, and may never be likely candidates for monoclonal antibody
therapies, unless prices drop, administration is simplified, and it
becomes evident these therapies are ultimately safer than other systemics
or prolonged use of topical corticosteroids.
When and if that happens, we will probably all have to work
together to pressure insurance providers to accept these therapies for
less severe cases of P, and to bring about compelling reasons for
manufacturers to reduce prices. In the meantime, thanks, Rozalie, for helping us glimpse the future. -Ed www.flakehq.com |