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Has anyone used Cellcept/mycophenalte for their scleroderma?


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13 replies to this topic

#1 greypilgrim256

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Posted 19 November 2014 - 10:04 AM

I have read many great things about Cellcept.  Is anyone on it, or has anyone been on it?  

 

Was it effective?  

 

Were there serious side effects?  

 

How long did you try it?

 

I am currently on Methotrexate but am worried about my kidneys, MTX can make lungs worse, AND the fact that it makes me feel awful.

 

This is what I have read from Johns Hopkins site:

 

A recent study suggested that methotrexate did not significantly alter the skin score (a measure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they appear to work.

 

I have also read studies of Cellcept reducing skin scores and keeping or IMPROVING lung function.   

 

http://www.ncbi.nlm....pubmed/21378404

 

http://www.ncbi.nlm....pubmed/18393919

 



#2 Joelf

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Posted 19 November 2014 - 10:53 AM

Hi Greypilgrim,

 

I've never taken Mycophenolate, so can't give you any first hand advice, although I know we have had members who've taken it with varying degrees of success and I expect they'll be able to give you some more help and advice about it.

 

I've found another link for you to Mycophenolate which does give information about the possible side effects etc. which I hope you'll find helpful.

 

Kind regards,


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#3 greypilgrim256

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Posted 19 November 2014 - 01:09 PM

As always, thanks Joelf



#4 jerrig1648

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Posted 21 November 2014 - 05:49 PM

This is my first post to this forum.  I have had Morphea with related Scleroderma on my fingertips and the side of my fingers for a couple of years.  I've been treated by a dermatologist with Clobetasol for both the Morphea and the Scleroderma on my fingers.  The Morphea seems to be in remission but my scleroderma is not.  My physician tried Methotrexate  and it only worked when he increased it to the maximum dose.  My fingers were completely well but I had to be taken off of it because my liver enzymes were not good.  Now he wants to put me on Cellcept but the side effects are very scary.  I am wondering if I should put up with some cracking, bleeding fingers over ruining my liver/kidneys.  Also, I see from many posts on this forum that most are seeing rheumatologists.  Should I be seeing one instead of a dermatologist?



#5 miocean

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Posted 21 November 2014 - 05:55 PM

At the start of my disease I tried cyclosphosphamide infusions but after two monthly treatments became toxic and they were stopped. It was also explained to me that although there may be an initial improvement, this treatment cannot be continued indefinitely and that after time there is a leveling off and those who were treated and those untreated end up at the same point. Of course, there are always exceptions to anything, Jo is one who had great success with treatment.

 

I take myfortic as an anti-rejection medication. It is similar to cellcept and mycophenolate. My skin had begun to soften from 45 to 27 before my kidney transplant but improved tremendously immediately after and went from 27 to 0 over a couple of years. My PFT's. and 6 Minute Walk Tests also improved. Whether this had anything to do with the medication or the natural progression of the disease I am not sure. 

 

I am amazed at the lack of studies for scleroderma. There certainly doesn't seem to be any lack of patients because although rare, it is not that uncommon. It is so frustrating to hear that they don't know why something happens, works or doesn't work, or that there is nothing that can be done.

 

You are really investigating things, keep on looking for answers. What works for you might not work for another, that is what makes this disease so difficult.

 

miocean


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#6 Joelf

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Posted 21 November 2014 - 11:55 PM

Hi Jerrig,

Welcome to these forums!

I'm sorry to hear that you've been suffering with Morphea and other unpleasant Scleroderma symptoms.

I've never taken Mycophenolate, although I do take Azathioprine, which is another immunosuppressant with equally worrying side effects. However, I have found that none of the side effects have applied to me, apart from initially having raised liver enzymes, which, after tinkering around a bit with the dosage, I was able to overcome. It also raises my Mean Corpuscular Volumes a little, but I have blood tests every six weeks, which would throw up any inconsistencies and my doctors' are satisfied that any possible side effects are balanced out by the benefit of taking the drug. I've been on it now for the past five years and so I think that any other side effects would have manifested themselves by now. Obviously, I wasn't ecstatic at the prospect of bombarding my body with powerful drugs, but in the beginning it was either taking the drugs or possibly dying, which tends to concentrate the mind wonderfully!! ;) I would emphasise that all drugs affect everyone differently, so it's possible that you could take Cellcept and not suffer any side effects from it or it could affect you badly; but obviously, you won't know that until you try taking it.

We do recommend that our members, if possible, consult a Scleroderma expert, and you would probably find that beneficial, as this disease is so complex and does require specialist knowledge. You might find that your dermatologist could work alongside a Scleroderma specialist (for instance, I see a lung specialist and a Scleroderma rheumatologist (among others!))

Kind regards,

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#7 greypilgrim256

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Posted 22 November 2014 - 08:02 AM

Wow, Miocean, from a 27 to a 0 is amazing.  I have read that there tends to be a natural course of the disease with skin softening around the 5 year mark, but as we know, everyone is different.   

 

I have also read a lot of studies that tout Cellcept as being one of the best medications for scleroderma and its effectiveness in lowering MRSS and stopping the progression of lung involvement.  I spoke to Dr. Hsu again and she reiterated her to stay with the MTX for now because I seem to have limited skin involvement, but significant joint/muscle inflammation as my primary symptom.  

 

I am also waiting on results from my 24hour urine test, so I guess we'll just see what they say.  Been having a lot of flank pain recently, and the home urine dipsticks keep turning up positive for proteinuria. 

 

I also made an appt. with Johns Hopkins in Maryland in December because they are considered to be one of the best hospitals in the nation and have a scleroderma center.  Dr. Hsu was very supportive of this. 



#8 Kamlesh

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Posted 26 November 2014 - 07:42 PM

I have taken Cellcept for many years and it was successful in softening my skin and getting Scleroderma under control, however, I have found it damages bone marrow and reduces ability to generate Red and White cells. My doctor had to stop Cellcept as RBC/WBC were going below lower range.

Although my Scleroderma on surface is within control, however, I am not sure internally as my GI doctor says Scleroderma is producing scar tissues internally and blocking my intestines causing severe stomach pain. Once I was hospitalized due to obstruction of small intestine.
Kind regards,

Kamlesh


#9 greypilgrim256

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Posted 27 November 2014 - 05:17 PM

Thanks for responding Kamlesh.  How long were you on the cellcept for? 



#10 Kamlesh

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Posted 27 November 2014 - 10:09 PM

I was on Cellcept at maximum dosage (I believe 3000mg/day) for 4 years with monthly blood test, last year rapidly reducing dosage due to worsening blood counts.


Kind regards,

Kamlesh


#11 alice1

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Posted 29 November 2014 - 12:58 PM

I have been on Cellcept for 13 years without serious side effects. My doctor at John Hopkins has kept me on it because of its positive effect on the lungs. I have damage done from the early stages but have been in remission for most of those years. My biggest problem and getting worse is my digestive tract vomiting and then serious diarrhea, often and prolonged. Doesn't seem to be to much they can do about it. Any ideas??... alice



#12 Amanda Thorpe

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Posted 29 November 2014 - 02:34 PM

Hello Jerrig

 

Dermatologists can treat simple morphea and if you're happy with how things are going then there's no reason to go elsewhere.

 

Systemic scleroderma is always treated by a rheumatologist, you haven't said which type you have, I am guessing limited? Many people get on well with mycophenolate and provided you have regular blood tests you could easily be one of these.

 

Let us know how things go.

 

Take care.


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#13 Amanda Thorpe

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Posted 29 November 2014 - 02:58 PM

Good point Pilgrim! We're all different having our own tailor made disease even though there are some guidelines about what scleroderma might do and when. I do wonder how old this 3-5 year stuff is just because I don't know of anyone who has actually experienced it. If you do experience it I must be told so I can refer to you as an example of someone with scleroderma that played by the rules!

 

I guess these guidelines could help give a newbie an idea of what to expect but for me it gave me unrealistic expectations. When I bought my first wheelchair in year 1 it was an assisted one because I expected to be out of it within 2 years, I moved into a powered one last year and now in year 7 I still have some hard, tight skin.

 

Now I just want to say that I am by no means jealous of anyone who has enjoyed the 3-5 years experience you understand. Not at all. :emoticon-crying-kleenex:

 

Take care.


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#14 Joelf

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Posted 30 November 2014 - 05:50 AM



...............My biggest problem and getting worse is my digestive tract vomiting and then serious diarrhea, often and prolonged. Doesn't seem to be to much they can do about it. Any ideas??... alice

 

 

Hi Alice,

 

I'm sorry to hear that you're experiencing the symptoms of vomiting and diarrhea; it must be very unpleasant and debilitating.

 

Thankfully I don't suffer with GI problems myself, although I have a friend who was suffering the same troublesome symptoms you mention.To a large extent, she was able to control them by being very careful with her diet; things like chocolate and a lot of fibre were an absolute no-no. I've included a links to our medical pages on Gastrointestinal Involvement and Diet and Scleroderma, which I hope you'll find helpful and informative.

 

Kind regards,


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