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Mycophenolate

13 posts in this topic

Hello all!

 

Happy new year to you all!

 

I have been asked to consider taking a drug called Mycophenolate.  Has anyone on these forums been taking this drug and if so what are their experiences of it!

 

Many thanks.

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Hi Mothergoose,

 

I've never taken Mycophenolate, although I've been on Azathioprine (another immunosuppressant) for the last six years, with very few side effects.

 

I've included a link to our page on Immunosuppressants, particularly Mycophenolate, which includes a link to give you some more information about the drug. Obviously, because it's an immune suppressant, it will need to be monitored regularly (I have six weekly blood tests).

 

We do have other members who take this medication, so hopefully they'll be along to give you more first hand advice.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

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I've wondered about immunosuppresants, but my rheumatologist has never suggested these or even mentioned them.

 

What happens when you get a virus or some other infection though?

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Hi Dimarzio,

 

I've been taking an immunosuppressant, azathioprine, for the last six years.

 

Apart from a few teething troubles with my liver enzymes when I first started taking it, which was easily sorted by my tinkering around with the dosage, I've had very few problems with it, including catching viruses etc. The dosage is such that it doesn't completely suppress my immune system, like it would for a cancer patient and I can honestly say I've never suffered with any more colds and viruses than the average person.

 

If I develop a chest infection, then I insist that my doctor prescribes antibiotics, as my lungs were affected by scleroderma,. The worse problem I've had was when I had my total hip replacement and although I discontinued the immunosuppressants four weeks before the operation and six weeks afterwards, unfortunately I developed cellulitis; also I had to have a metal plate inserted in my wrist after a Colles fracture and developed cellulitis after that as well.

 

One of the hazards of taking immunosuppressants, I fear! :wink:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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It's more than 3 years since I started on mycophenolate for interstitial lung problems and it has worked really well and has also softened some area of skin that were thickening on my torso. I have monthly bloods for liver function checks and have to wear sun cream in the summer ( when we get some) . There have been no side effects as far as I know and my lung function is almost normal.

Judith

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Hi Judith,

 

Welcome to these forums!

 

I'm very pleased to hear that you have had such a positive response from mycophenolate and long may it continue.

 

I also have interstitial lung disease, although I take azathioprine with similarly successful results and thankfully the same lack of side effects.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Dimarzio

 

It's a simple question, what's worse, the disease or side effects? I took mycophenolate for 10 months approx then ditched it because of side effects. Did the same with methotrexate.

 

Scleroderma has affected my heart and rendered me disabled. I would still ditch medication for side effects but now it's because I can't afford to have anything reduce my quality of life.

 

Mycophenolate is considered a good, safe and effective drug that many people take.

 

Hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Barncon

 

Welcome and I'm glad the mycophenolate helped you. I hope that you continue to be stable or improve.

 

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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I started Mycophenolate on December holiday 2015 after getting steam-rolled by rapidly progressing diffuse systemic sclerosis.  Surprising when I think back to where I was 8 months ago.  Now I'm hoping that my meds work.  Some of your comments have strengthened my optimism.

 

I had slight elevated liver enzymes early on but now my labs are all normal taking 1 gram of mycophenolate twice daily.  Joelf, I'm intrigued by your comment about altering the course of your medication to accommodate hip replacement surgery.  Coincidentally, I plan to initiate discussions with my doctors (my general practitioner, rheumatologist, and pulmonary specialist, all who I see next month) to see if having left shoulder replacement surgery is possible given my scleroderma that includes lung and probable esophageal (I have an endoscopy scheduled next month too) involvement.  I had my right shoulder replaced in 2014 with no complications although that was prior to my systemic sclerosis diagnosis.  My left shoulder definitely has become a quality of life issue.  I'm not sure if my systemic sclerosis has contributed to it's deterioration, but regardless I need to get it fixed.  Of course I need to talk to my orthopedic surgeon as well.  Hopefully my tight skin won't pose a problem. 

 

Can I assume that it is possible to have major surgery while being treated for diffuse systemic sclerosis? 

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Hi Speedo,

 

Welcome to these forums! I'm sorry to hear that you have rapidly progressing diffuse scleroderma.

 

The orthopedic surgeon who operated on my hip insisted that I discontinue the immunosuppressants before, during and after surgery, as he was very concerned that I would develop a bad infection if he operated whilst I was taking them. Actually, it was a right palava, as I had to get permission from my lung consultant and scleroderma specialist, in order to discontinue them and liaising between all the hospitals concerned was a logistical nightmare. I'm afraid the National Health Service administration leaves a lot to be desired! :wink:

 

I would just say, however, that I have limited scleroderma and thankfully my lungs are pretty stable now; I'm not sure whether your scleroderma specialists will agree to major surgery if your scleroderma symptoms are severe. You will obviously have to take this up with them on your next appointments. I have, however, heard of scleroderma patients who've had successful surgery. 

 

I can understand how much your shoulder can impact on your quality of life; my right hip got to the stage where I was unable to walk without crutches and was extremely painful. Unfortunately, my left one is probably going to need replacing in the future as well.

 

Now you've joined us, please do keep us updated on your progress.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Speedo

 

Belated welcome, if the shoulder is now a quality of life issue, I hope that you get the surgery. Unfortunately or perhaps fortunately, depending on your point of view, doctors are into quantity of life more often than quality.

 

Let us know what happens.

 

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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I have been on Mycophenolate since 2009, back when it was considered an experimental drug for scleroderma.  It was prescribed by a researcher at Duke University Medical Center after a battery of tests.  Works for me, and I can't thank him enough or my Rheumatologist for referring me to him.  Good luck.  You will do fine.

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Hi Standtall,

 

Welcome to these forums!

 

Thank you for letting us know about your experience with mycophenolate and I'm very pleased to hear that it has been a successful medication for you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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