Hi, I've been invited to take part in a drug trial of mycophenolate in early stage Limited Systemic Scleroderma. It's being overseen by Prof Denton and Royal Free/ UCLH. I understand the drop is commonly used for people receiving organ transplants and in the diffuse cutaneous form of Sac, but the trial is to see if taking it early in the Limited Systemic form of the disease can slow or halt progression.
Do any of you take it and what side affects have you had? My main joy in life is going for long walks in the countryside, so I'm daunted by the idea of having to shade from the sun all the time.
Also - will it make me very vulnerable to other infections (including but not limited to Covid?)
Hard one to weigh up. In principle I'm in favour of helping the researchers who are trying to help us.
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LadyTrundle
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hello Lady Trundle. I am a diffuse scleroderma patient and have been taking mycophenolate mophetil for almost 6 years now. My doctor thinks it has slowed the progression of lung involvement. I have not had any side effects. I was very cautious with covid, but unfortunately I was infected before the vaccination started. I survived that. After the vaccination I was infected again last year, the symptoms were lighter. The doctor usually suggests stopping the medication for some days when a serious infection occurs. During these years, I have had a urine infection 3 times, this is the worst I have experienced. I am being careful though, wash hands thoroughly, wear a face mask in crowded places, avoid using public toilets or public transport, especially with the covid situation.
As for the sun, I live in Greece, so you can imagine… I wear sunscreen in the summer, a scarf around my shoulders and arms or a thin cotton shirt with long sleeves when I drive or have to walk under the sun and that’s it.
Summing up, my experience with mycophenolate is good in terms of side effects. Recently I have had new symptoms, so I am questioning the effectiveness, but this is another discussion
Hi Boome, thank you for replying so fully. It's interesting to hear your experience, both with exposure to infections and with the sunshine. It seems a lot of people have few side affects apart from those. I have (so far only slight) lung involvement, so it is interesting your doctor highlights that benefit.
Take care, I hope your new symptoms get resolved and identified/ treated effectively.
What have the researchers told you? I would have thought they are best placed to advise how it will impact the chances of catching something else. Ref the sun .... just wear long trousers, long sleeves and a sun hat ....just think no sun damage so you'll look 10 years younger in the future xx theres always an upside 😉
The researchers were good and sent lots of info (though the list of potential side effects freaked me out and I certainly couldn't have risked having them with some other stuff that was going on at the time). But trying to make a decision in the round - so nice people here s=chip in.
I am on a maximum dose of Mycophenolate for what my doctors think is overlap of limited SSc and Sjogrens - although my antibodies are only positive for scleroderma. I’ve been taking it for 3 years, having tried but failed to tolerate others when I was previously diagnosed with inflammatory arthritis. It has definitely helped my skin problems and also my dry eyes are much improved.
I see a dermatologist yearly and am told that, as long as I wear factor 50 (I am extremely fair complexion) and a sun hat in the summer months, I’m perfectly safe to enjoy the sunshine. It has given me no side effects I’m aware of and the disease has only progressed in my gut - which no medication would prevent from happening I’m told. I see Professor Denton for the first time in July for a one off consultation so I hope my experience of symptoms and medications might be useful to him perhaps. Apart from severe GI I have no other organ involvement so far and my symptoms have been evolving now for 12 years. I’ve managed to avoid Covid for now and have only had once bad cold since I started Mycophenolate however I was shielding until recently.
Thanks OldTed. That's very encouraging and sounds appropriate to my experience. Good luck with Prof Denton in July, I hope it helps. I first met him a couple of years ago and he seemed to radiate 'welcome to the team'-ness!
Oh how lovely - I’ve never really felt welcomed to any team in terms of health conditions so that will be a first! Mind I’m travelling down from Scotland so it would likely be one off as no funds for follow ups. My local rheumatologist is great but they don’t see scleroderma patients here and those who do weren’t right for me personally. So I’m seeing him just to learn more and my consultant here is very pleased so hopefully they will benefit from his knowledge and it might be useful to him to learn how well Mycophenolate has worked for me. I’d love to contribute to scleroderma research x
thanks so much - yes a voyage of faith sums it up although it’s not strictly necessary for me as I’m happy with current diagnosis and treatments. But I would like to learn more about my rare SSc antibody and get annual echocardiograms and PFTs so maybe he will put this in writing for my consultant and also tell me about any new or existing scleroderma/ myositis antibody research going on in UK. I’m being funded to do some research for a work related project so can use time in London to do this too hopefully.
Lol about the weather - my consultation isn’t until July so I’m more worried that everything will come to a halt from heatwave than snow and ice! 🥵😅
I’m from the US, was diagnosed 9 years ago and have been taking 1000 mg twice a day for the past 7 years. I have annual cardio and pulmonary exams along with my bloodwork every 3 months. My scleroderma continues to progress mostly in my hands and in this past year my feet (toes have begun curling up). However, I can happily report that there doesn’t seem to be any internal organ invasion.
It seems that the only negative side effect has been somewhat significant hair loss, for which i began taking folic acid about 16 months ago.
Thank you Lou, how nice we can be in touch and support each other across oceans! I'm getting the impression that the major use of the drug is seen in internal organ protection - and as that's the 'hidden' aspect, makes it more interesting. As for the hair ... well, as a menopausal woman, I'm going that way anyway! Did some one mention a wig...?!
I've been taking mycophenolate for 3 years. 2 gms/day. Thus far I have no side effects. I have limited systemic scleroderma and it has helped enormously. I just take sensible precautions when out to avoid unnecessary exposure to infection. I obviously have flu jab and also the pneumococcal jab as my consultant said trials had proved it was beneficial. I have 3 monthly blood tests to monitor for side effects.Good luck
Thanks johncot. Interesting that you have the same form as me - and you seem fairly relaxed about the side effects. All in all I think I'm coming round to the idea (though of course I might end up in the placebo/ control group!)
Hello FelixFelicis (great name!). Thanks for confirming the many don't experience side effects. I'm sorry it's not proving as useful to you though - good luck with the Rituximab appraod, hope you can start it soon and it suits you.
I have limited systemic sclerosis and have been on mycophenolate for 6 years. I have had minimal worsening of skin tightening in that time although obviously do not know if that is due to the medication. I do have worsening G I issues.
I work out of doors so I am more careful to keep out of the sun, I did have a couple of dodgy looking moles removed but they were benign.
I do have more frequent minor infections ( mainly in fingers due to working in dirty conditions) and had to shield during Covid. But having had all my jabs, ( and I will continue to get boosters) when I caught Covid last summer was not really any worse than my husband’s experience. I also have annual flu jab and every 5 years, the pneumococcal booster.
No other side effects. Seem to remember I did get an upset tummy at first; like most patients I was started on a low dose and increased over several months to the maximum which is 3 gms per day. Your bloods will be checked regularly to monitor your white blood cell count.
Thank you cowhide. A useful warning about upset tummy (and to give it time to settle before abandoning the drug). It's also useful to know the kind of thing to look out for (moles, finger cleanliness) along the way. I've signed up and will wait to see if I actually get the drug or not!
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