Mycophenolic medicine for scleroderma

[Cookierey31]

Hi everyone I’m new on here, trying to get as much information about anyone that has had scleroderma long term. Helping a family member understand what it is he has . Recently got put on mycophenolic and a week later was put in hospital for stomach pain. Does anyone have stomach issues with scleroderma? He’s ok now but we see a rheumatologist in a few weeks, it’s affected his lungs hoping to help him get back to his normal activity. Thanks I’m advance I guess just looking for support

[LucyJean]

Hi there, it sounds like the drug they put him on was Mycophenolate Mofetil, which is an immunosuppressive drug. It sounds like he had a reaction to the drug, rather than it be linked to his scleroderma, but your digestive system is often involved with this condition. The best approach is to wait and see what the Rheumatologists says after looking at what symptoms he is experiencing and examining all his investigations. If he wants you to, I would go along to the appointment so you both hear what the plan of action is. Go to the SRUK website and there is lots of information on scleroderma.

sruk.co.uk/

This early stage is often the hardest because there is so much that is unknown. Once you have a diagnosis and treatment plan, that can be easier.

All my best

Lucy xxx

[Cookierey31 in reply to LucyJean]

Thank you LucyJean I appreciate the response. Yes I will be going along with him to his appointment as I have been. Before this disease I wasn’t sure exactly what a rheumatologist did or how they can help but after reading many posts on here it seems like they really help manage. Also the specialist he seen in San Francisco suggested his primary refer him to a scleroderma specialist as well which I will ask about.

Is there a special diet anyone is on ? Seems like it’s his stomach that he’s having more issues with these last few weeks. I will go on the Sruk website thank you for the info.

[Hidden in reply to Cookierey31]

Hi. My son has scleroderma as part of Mixed Connective Tissue disease. He follows an autoimmune protocol diet which helps a lot with scleroderma symptoms and stomach pains. Advocates of these kind of diets include Mark Hymen, Mickey Trescott, Sarah Ballantine, Josh Axe to name but a few - just google for more information.

He avoids gluten, dairy, soy, all grains, processed food. Good luck.

[AnnieMc]

Hello there. I have had Scleroderma for 13 yrs, Was changed from Aziathropine to Mycophenolate about 5 years ago. I suffer from a lot of Gastrointestinal problems but I can't say if it makes the condition worse or not. I also have Fibrosis of the lungs and other multiple complications. There is a fine line what symptoms are caused by the Scleroderma or the side effects from the prescribed drugs. One thing for sure is that everybody with this disease is different and needs their own treatment plan. Not saying it's easy, but acceptance helps, try and be positive, and live within your comfort zone. Hope this helps, best wishes .

[Cookierey31 in reply to AnnieMc]

Thank you Anniemc, all feedback I could get is helpful. Before last month I had never heard of scleroderma and thebdoctor did say he had Inflammation in the lungs not scarring not sure what difference that makes. Some days his stomach issues are fine and sometimes they aren’t. Hopefully a rheumatologist will be able to help us more with symptoms. Reading people can love with this gives us hope for a future.

[8whitetoes]

I have learned ..., With my GI issues , if I sleep in a *Recliner* ..., That I Feel so much better..., Some people only need use a couple of bricks under the head of the bed, giving a 6 inch incline an it helps with GI issues ...

I hope he will be feeling better soon.🤗🤗🤗 great to have someone Advocate for him💗🤗💗🤗