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evelynet

Mycophenolate Mofetil

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Hello

 I am new to this forum and would like some advice on taking Mycophenolate Mofetil. I am a 70 year old non smoker and drinker and have always been fit and active. I was diagnosed with Scleroderma and Raynauds four years ago and have been having regular hospital check ups ever since. Also to complicate things I had a colostomy a few years ago due to a fistula between my bowel and bladder.

 

At my latest hospital visit this past week my consultant suggested that I start taking Mycophenolate Mofetil but I will not be seeing my general practitioner till early in the new year so won't be starting till then. I was therefore wondering if anyone who is on this drug can give me some information on how they are dealing with it as I am a bit nervous of some of the possible side effects. This is due to the scarring of my lung and lung function getting slightly worse.

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Hi Evelynet,

 

Welcome to these forums!

 

I'm sorry to hear that you were diagnosed with Scleroderma and I can understand your concern about taking Mycophenolate Mofetil. I've never taken that particular medication, so can't advise about it from my own experience; however, I do have lung involvement and have been taking Azathioprine (another immunosuppressant) for the past five and a half years without any real problems, apart from a few teething troubles, which were ironed out fairly quickly in the beginning. I do have blood tests every six weeks, as you will do with Mycophenolate, just to check that everything is tickerty-boo. I would emphasise that medications do have different reactions and side effects with different people and obviously your consultant should be keeping a close eye on you for the first few months that you're taking it.

 

I know we have other members who are taking Mycophenolate and I expect they'll be along to give you some more advice about it.

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi and welcome,

 

I too don't know anything about Mycophenolate, never having been on Immunosuppressants.   In my case it was at least 47 years before I was diagnosed and by then all the internal damage was done and I have no visible skin or joint involvement.

 

I am interested to see that you have a Colostomy and I wonder how you are finding it long term.   I presume that it is still with you because of the reason for having it.   My problem is severe Bowel Atrophy and I have been in discussions with the Colorectal Surgeon at my hospital about an Ileostomy or Colostomy.   He is loathe to agree and for the past 3 years I have been trialling an SNS which quite frankly does not help me and I am psyching myself up to insist on surgery when I see him again in February.

 

Everything I read on line seems to indicate that folks who go down this road are pleased they did but I don't think any of the ones I have read about have been Sclero patients.

 

I too am a non-smoker and have PBC so have never been a drinker, and turned 70 earlier this year, so feel that you would be a good person to talk to.

 

Best wishes

Judyt

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Hello

   Thanks for the quick reply Jo.

 Judy, I spent many years in pain with diverticular probably having scleroderma but not diagnosed at this time. Six years ago I spent three weeks in hospital over holiday with a fistula between bowel and bladder with part of my bowel being removed resulting in a colostomy. I have been offered a reversal but they will give no guarantee of it working and things could be just as bad as before so I am happy to stay as I am. I cope fairly well with the limited mobility of my hands and wrists. We still caravan and I have flown over to New York once and not had any problems though accidents do happen now and again. Lots of food which I enjoyed before is a no no though as it isn't compatible with the system now.

Hope that this helps. Good luck.

  Evelyn

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Hello Evelyn

 

Welcome to the forums! I was on mycophenolate and found it helpful, well I think I did as I am sure it helped some of my skin soften. Mind you as this disease can wax and wane you never know if it's medication or disease progression, or in this case, lack of. It's a well used drug in systemic scleroderma particularly if there is lung involvement.

 

I suppose you can but try it and always stop if you don't like it but do let us know what you decide.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Evelyn,

 

If you have read my other posts today you will see that I have just been in hospital for the past 3 days.   I had some interesting room mates during that time and one in particular was there following Ostomy surgery.  

 

She is a relatively young woman with Crohn's disease.   Her surgery is a 3 stage programme because her bowel is expected to recover sufficiently to allow a reversal.   I was able to chat with her for a while about her experience and she was wholeheartedly pro having the procedure.   She has lived with the same problems of frequent diarrhoea and incontinence that I have and said she would have no hesitation in suggesting the same help.

 

There is no hope of my bowel recovering but a release from the constant problems seems like bliss.   She showed me her bag and explained how she deals with it so I am thinking I am going to try to persuade my doctor. (who is a Prof, by the way) that it is what I need.   I know that there are risks with the surgery and I now also am on the list for a Heart Valve repair or replacement so looks like the hospital is going to be my home away from home for a while yet.

 

Thanks for your reply, it really helps to hear what others think.

 

Judyt

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Hello all

Thank you for taking the time to reply to me. As I have said I will be seeing my general practitioner In early January before starting on Mycophenolate Mofetil and will get back to you with problems or otherwise to let you know how I am getting on with it. I would like to wish Judyt all the best with your future treatment and hope that all turns out well.

Best regards

Evelynet

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Hi Evelynet,

 

I have been taking mycophenolate mofetil for nearly 6 years as I have lung involvement from the scleroderma. I think that I can say now after this length of time that the mycophenolate is helping. I have had 2 short breaks in treatment and during both these periods my skin definitely got tighter and I just started to feel that awful fatigue again. I am not saying my symptoms have improved significantly, my lung function has deteriorated, but I know that I definitely feel worse without it. If you decide to give it a try you can, of course, stop it at any time.

 

Good luck whatever you decide. :)

 

Regards,
Helen.

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