Has anyone been prescribed Mycophenolate for stiff and painful hands rather than for ILD?

[lynntregaron]

I have limited scleroderma and have been taking Hydroxychloroquine for 10 years. 2 years ago I developed corneal lesions which worsened over the next year. 1 year ago my Hydroxychloroquine dose was halved to 200mg. My corneal lesions have improved but are still present. For the past 3 months the pain, stiffness and swelling in my hands has recurred and is worsening. My rheumatologist doesn't want to increase my Hydroxychloroquine so has prescribed Mycophenolate. Has anyone else been prescribed it for reasons other than interstitial lung disease?

[ApusApus]

I was diagnosed in Jan this year and put straight on to Mycophenolate. I haven't had any scans to see lung involvement yet, I was put on it to slow down the thickening generally as I understand it.

[lynntregaron in reply to ApusApus]

Thanks for your reply. It's helpful to know others have been prescribed it for conditions other than ILD.

[cheeselover342]

Hi there. Yes I am on Mycophenolate which was prescribed 5 years ago for my primary symptoms at the time, painful stiff hands and acute acid reflux. About a year later I was prescribed Hydroxychloroquine 200g to "help reduce inflammation" by my rheumatologist. Eye tests since have been OK. I seem to get on well with Mycophenolate, so hope that remains so. Scans and lung function tests and echos all OK at the moment.

[lynntregaron in reply to cheeselover342]

Thanks for your reply. It's helpful to know others have been prescribed it for conditions other than ILD.

[OldTed60]

I’ve been on Mycophenolate for 4 years. I don’t have ILD and my main problems have been severe GI to date. I used to have tight, painful hands prior to starting and lower dose now seems to have brought tendinitis. I was told that it’s preventative for all systemic issues relating to scleroderma (and Sjogren’s which I also have) rather than just lung involvement.

[lynntregaron in reply to OldTed60]

Thanks for your reply. It's helpful to know others have been prescribed it for conditions other than ILD.

[Coco123456789 in reply to OldTed60]

Hi. I have been diagnosed with limited scleroderma, sjorgrens and osteoporosis! My right hand and fingers seem to have lost all their power, the hand is crippled/ locked. I am not taking anything...what did the mycophenolate do for this, do you recommend it? I do get very tired and keep migrating to my bed...ugh!Thank you

[OldTed60 in reply to Coco123456789]

Were you offered anything? I was originally diagnosed with RA in hands 13 years ago and put straight on methotrexate and Hydroxichloraquine for this. The combination really helped my hands but after a few years I had serious tolerance issues with both - and sulfasalazine and Azathioprine also caused serious side effects.

Then my diagnosis changed to Sjogren’s (seronegative) with neuropathy and severe osteoarthritis of spine plus Raynaud’s. I was told no treatment and discharged but then got to a different rheumatologist who agreed to Mycophenolate - which has really helped inflammation and Sjögren’s. Also Iloprost infusions. Then last year I was diagnosed officially with systemic sclerosis. My hands have never been as painful as with RA but are often very tight and burn in the mornings when I wake. I do have mild OA in hands and severe tendonitis in left elbow.

I find Mycophenolate very easy to tolerate and suspect it has helped my Sjögren’s and Scleroderma progression although I am having to stop it prior to various surgeries this year so I guess this will be the bigger test. Hard to say about skin, hands and joints as I also have EDS

[lynntregaron in reply to Coco123456789]

I haven't started taking it yet as I am having surgery next month and will have to wait until any risk of infection has passed.

[dianekjs]

mycophenolate isn’t just for ILD, it’s a very potent immunosuppressant prescribed for many autoimmune disorders as well as to prevent organ rejection in transplant patients. It has been most studied for skin and lung involvement in systemic sclerosis, but may have other benefits as well. The stiffness and swelling in your hands would fall under the heading of skin involvement, which Cellcept/mycophenolate is highly effective for. It is also invaluable at helping to control overall disease progression. I’ve been taking it for a couple of years now and it probably saved my life.

[lynntregaron in reply to dianekjs]

Thank you very much for your reply. Mycophenolate seems to be a much stronger immune suppressant than Hydroxychloroquine so I was a bit concerned but my rheumatologist does seem to be on the ball when it comes to scleroderma so will trust her judgement. It's just nice to get other people's experience of a drug.

[dianekjs in reply to lynntregaron]

Hydroxycholoroquine has only mild immunosuppressive properties, some physicians and researchers don't even consider it a true immunosuppressant but it is a DMARD (disease modifying anti-rheumatic drug) and can be very effective for certain things. HCQ won't do much to control overall disease progression like mycophenolate can. I hope it works well for you, be prepared it can take a long time to show significant effect, anywhere from three months to a year.

[lynntregaron in reply to dianekjs]

Thank you very much for that additional information.

[Juanburr1950]

Good morning! I have Sjogrens Syndrome, Raynauds and Mixed Connective Tissue Disorder. Hydroxychloroquine 400mg daily has helped me tremendously. This is the medication that I take for my condition.

[lynntregaron in reply to Juanburr1950]

It helped me too until my dose was halved due to corneal lesions which are extremely rare.

[Lupiknits]

I take mycophenolate and hydroxy for systemic sclerosis . I have no lung involvement (pulmonary function tests each year).

[lynntregaron in reply to Lupiknits]

Thanks for your reply. It's helpful to know others have been prescribed it for conditions other than ILD.