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Scleroderma (Systemic Sclerosis): Anyone else?
Autoimmune Diseases | Last Active: 22 minutes ago | Replies (69)Comment receiving replies
@altabiznet GOOD MORNING,
I WAS ALSO DIAGNOSED WITH SMALL FIBER NEUROPATHY AND CUTANEOUS VASCULITIS.
I DO HAVE NERVE DAMAGE DISEASE AS MY NEUROLOGIST EXPLAINED IT TO ME. RIGHT NOW I AM TAKING 500MG OF MYCOPHENOLATE IN THE MORNING AND 500MG AT NIGHT. I HAVEN'T REALLY NOTICED ANY SIDE EFFECTS BUT I HAVEN'T NOTICED IMPROVEMENTS EITHER.
I HAVE A BIT OF A RASH ON TOP OF MY RIGHT HAND. IT'S A LITTLE HARDENED BUT NOT TERRIBLE. I HAVEN'T NOTICED ANY DARKENING ON MY WRISTS, KNEES OR ANKLES. I DO HAVE JOINT INFLAMMATION WHICH IS WORSE ON SOME DAYS.
MY WORST SYMPTOMS RIGHT NOW ARE THE FATIGUE AND BURNING IN MY HEAD, MY MOUTH AND MY LEGS.
THE LAST FEW DAYS I HAVE ALSO BEEN FEELING HEAVY LIKE I'M CARRYING WEIGHTS AROUND ON MY BODY.
I PRAY YOU FIND SOME RELIEF SOON. PLEASE STAY IN TOUCH! IT'S A BLESSING TO CONNECT WITH PEOPLE WHO ARE FEELING SOME OF WHAT YOU'RE FEELING!
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@jandy88us
@jandy88us
The feeling of "carrying weights" may be a sign of worsening inflammation, which is a part of scleroderma progression. It also causes nerve inflammation and sensation of burning. A rash on the hand - may be a sign of vasculitis. Sometimes, low dose prednisone is prescribed for autoimmune neuropathy. I would ask my rheumatologist if prednisone taken with Mycophenolate is indicated in scleroderma.
Have you tried ibuprofen? Not a cure but may help with the symptoms of not feeling well during flare-ups. Coated formulas or soft gels are better for the stomach. Ask your doctor first if it is OK to take it with Mycophenolate. She/he can also prescribe Ibuprofen Coated ER 600mg formula available only by Rx.
Living with Scleroderma is a difficult journey, and it takes time for Mycophenolate to work. You may feel better after 1-2 months on the drug. It slows down inflammation and disease progression. Other medications prescribed in Scleroderma, like methotrexate (for arthritis), also may be added to Mycophenolate by your doctor. This usually happens when no response in 3-6 months on single agent therapy. Methotrexate is a chemo and has some unpleasant side effects. A Biologic drug Actemra injection (RA, SS) is prescribed only for interstitial lung disease in scleroderma (ILD). It also works on skin and joints. If well tolerated, may be a good choice. But it is prescribed only when ILD is documented.
Please keep in touch with sharing your symptoms and keep posting your progress with Mycophenolate. Best regards