Mycophenolate

[satellite]

I have limited scleroderma now for 10 years I have just been prescribed mycophenolate has anybody have any tips or advise as I feel a little worried about taking these drug

Many thanks

[Hidden]

Hi Satellite. I’ve been on mycophenolate since January of this year and like you I was worried about taking it. The only side effect I’ve really experienced is tiredness and I’ve just had to listen to my body and rest up when I feel tired and not try to fight it. Are you taking this for skin tightening? My consultant has said he that he wouldn’t expect any significant changes to the skin for 18 months to 2 years although he thinks my skin is becoming softer. If you do experience side effects get in touch with your Rheumotology team immediately. It was recommended I have the pneumonia jab if you haven’t had it and get your annual flu jab. If you feel a cold coming on get in touch with you go immediately as this drug does dampen the immune system even more. If I can be of help let me know. Big hugs. x

[satellite in reply to Hidden]

Thank you for replying and the advice

[satellite in reply to satellite]

Thank you for replying I have a problem with shoulder skin thickness and jaw so hope it gets no worse and this helps

[UCTD]

Good morning, I too have limited systemic scleroderma and after 14 months of methotrexate,steroids and Plaquinel, I switched to MMF in January 2018. It has improved my symptoms, I am still on Prednisolone,Plaquinel, have aRituximab infusions every 6 months, but overall the MMF has been better for me.

I take 3G per day 6 tablets, they are large tablets, but take with plenty of water. I take them after breakfast and after supper, as I have many other tablets to take, I do get a bit of crappy pain and sometimes constipation alternating with loose stool. However, in the scheme of things, I have gotten used to it. Good luck with it, I hope it halts the progression of this horrible disease.

[UCTD in reply to UCTD]

That should read crappy abdominal pain, not crappy!

[UCTD in reply to UCTD]

Crampy 🤣

[satellite in reply to UCTD]

Thanks for replying I don't feel quite so worried about taking them now

[pipesflies]

I also have the same condition. I started taking Mycophenalate about 6 months ago as there were signs of some deterioration of lung function. I am on 2G per day. I was recommended to have the pneumococcal injection and the Shingles injection prior to starting it. I am 65 so needed the consultant to write to my GP explaining why I needed the Shingles vaccine (I think normally only for over 70 year olds?) I seem to get more tired than before but it is manageable and a small price to pay. Good luck.

[satellite in reply to pipesflies]

Thank you for replying hope everything goes well for you

[cowhide]

Been on mycophenolate for 4 years with no real issues. As stated above, you will need to get pneumonia and flu jab due to depressed immunity and it takes several months for any positive impact from the drug. I seem to have no side effects but you should go on a dose that is stepped up gradually (I ended up on 2gms daily but it has just been increased to 2.5 due to skin tightening) and you will have regular blood tests to check what is happening (your white blood cells are the ones that will change most) although as long as you are OK these will reduce with frequency once you are stable.

I have 3 tablets first thing and then 2 late afternoon on an empty stomach.

The only thing I have noticed is more minor infections. As a dairy farmer I am in a dirty environment and I have found that any little scratch or cut is more likely to get infected than in the past. As a result I have needed antiobiotics several times in the last year when hardly ever used to need them previously. My GP stressed to me how important it is to make sure that I tell any health care professional about being on myco and the importance of a strong dose of antibiotics fast, due not only to being immunosuppressed but also because of the poor circulation (esp in fingers and toes) due to Raynauds.

[satellite in reply to cowhide]

Thanks for replying mine is hands jaw and shoulders if it helps so it gets no worse will be good

[KatieAnna]

Hi I've been on Micofenolate Mofitil for over a year for limited sclreroderma, and apart from 1 minor skin infection I haven't noticed any problems. I take 2 g per day for inflammation in my feet, and it is keeping it under control fairly well. I have 3 monthly blood monitoring and it's been fine. I haven't been advised re pneumonia or shingles jabs. I'm 64 and have been diagnosed for 15 years.

I hope it goes well for you. Xx

[satellite in reply to KatieAnna]

Thanks for replying its nice to see that this drug does help so it will be worth trying started on Monday so fingers crossed hope you keep well xx

[cowhide]

PS I forgot to add - in my area, Mycophenolate is a consultant-only prescription, GP's can't do it even under shared care. So as my Rheumy has to see me to prescribe it, and can only prescribe 8 weeks at a time I have the advantage of an appointment with her every 2 months. Without the prescription, I suspect I would get to see her far fewer times.

[satellite in reply to cowhide]

Hi thanks for replying my consultant has given me 3 months supply I then have an appointment with him I should think it is nicer to see your Dr regular hope that happens to me keep my fingers crossed lol

Thanks xx

[mad4cavs]

ive been taking it for 3 years the benefits far outweigh any side effects i have diffuse scleroderma,i feel it does cause fatigue and you need to be vigilant for any infections and seek help as soon as possible,my skin is softer and i feel its keeping my scleroderma under control

[satellite in reply to mad4cavs]

Thanks for replying hopefully the tablets will work eventually I suppose we all want instant relief which isn't going to happen lol

Thanks again

[Ricexxjm]

do you know if damage (long-term) is done with the cold reaction from renaulds?

should i avoid these reactions or ignore the effects?

[Jen3131]

Hi, I think there is a possibility that I might be prescribed this drug next week. I don’t think it would be a normal option for me at this point but I have side effects with Methotrexate. My boss, a GP, sent me a good link from an arthritis type forum yesterday but regrettably I deleted it after I read it - it was a good basic read and I also noted the infection risk and there was a comment about keeping homes clean and hygienic and keeping away from ill people particularly chicken pox/shingles and not having live vaccines. Good job I am an admin worker at the surgery and not in the public area! We will have to keep in touch if they give it to me and compare notes albeit we are all different/react differently. Jen