Scleroderma Support Group
Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.
I took Methotrexate for three years. MTX hangs around in the body long after you are off the med. I also learned that by the time you see adverse effects showing up on blood work, then the damage is already in progress. I am very concerned how doctors will just put us on a DMARD for long periods. DMARDs are all serious meds and not enough research has been done on how long is actually a safe period to stay on one DMARD.
I now take Cellcept. I originally took 1500mg, but my doctor lowered the dosage to 750mg due to my liver enzymes elevating. I really find Cellcept to be helpful for my DM and Scleroderma.
When I first started Cellcept, I had a bad drop in blood pressure after seven days when starting the drug. I quit taking any DMARD for six months. I decided to try the Cellcept again. The second time, I decided to take only 250mg per day. I later went to 500mg per day, then 750mg and finally 1500mg. I allowed my body to get used to the drug and stabilize on the smaller doses first. Adjusting to the Cellcept slowly at smaller doses and building up over time worked well.
I eventually realized that the original drop in blood pressure that I had when starting Cellcept, was actually a symptom of Chronic Kidney Disease. My blood pressure will go from high to very low daily. I also have burnt orange urine which is also CKD.
I do see improvement in my disease even though I have a lot of things going on in my body. I think the success of any DMARD is that you should be able to function as well as possible from day to day. I am not working now, but I am considering finding a part-time job. I would consider the Cellcept to be a contributor to helping me function well in spite of all my overlaps. (Of course, The Lord is really the main contributor to better health!)
Good Luck on your choice of a new DMARD. I hope this helps.
I have thick skin on my ankles, feet, and legs from the knees down. i have telangectasias (red spots) on my stomach and chest and arms and legs. I have pitting edema (swelling that when you push in on it it stays in ) on my legs and feet.
I have lots of joint and muscle pain all over and have trouble with energy and walking.
I still manage to hold down a full time job right now but its getting harder and harder to do.
Everyone is different and what works for one person may not work for someone else. Good luck on finding a DMARD that works for you.
I know I don't have kidney involvement, we test them monthly and they've always been really good, and I know my liver goes up and down (not to worrisome levels), but we do keep an eye on it. I'll have to take it easy whatever we do try.
And I've been on both plaquenil and prednisone before, plaquenil didn't work for me and the prednisone, well I had such crazy side effects I never want to go on it again.
I hate the uncertainty of this all, but I know its a waiting game until I see my rheumatologist.
Thanks again, and i'll let you know how things go.