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Remicade Success Story
from Rozalie S.

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 everywhere the pustules used to be.   It was hard on my job, on my team, on my husband, and on my soul.   We also tried very small doses of UVB and PUVA, but they both left me screaming all night.

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 visit, nurse set up and follow up, etc.  So while Ralph's estimate of $8000 per dose is high (I'm sure he's using more than me), it is not totally off the mark.   I was placed on the schedule for Rheumatoid Arthritis.  First they give you an initial set of 3 infusions, an initial one, then one at two weeks, then one three weeks after that.   My first infusion was 2mg/k, my second at 3mg/k, and my 3rd infusion was at 4mg/k.    After the first three, you're back every 8 weeks.  At around $4K per infusion, it is frightfully expensive.   The dosing schedule for Crohn's patients is different.  My understanding is that they give Remicade to Crohn's patients at 10mg/k an infusion every 8 weeks, without the inital 3 infusions.

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


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:


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, Your psis, -Rozalie S.


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

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