Scleroderma (Systemic Sclerosis): Anyone else?

@jerce
Wow 60. I have maybe 6 and just always charging. I have heated gloves and socks.
I get Raynouds at times of stress as well.
I have Sleraderma and Sjögren's as well.. So not a good thing. Hugs and prayers sent your way...

@becsbuddy

@becsbuddy
I am 80 years old and was diagnosed with diffuse systemic scleroderma about 4-5 years ago. Was always very healthy and fit and active previously, no other big issues. It was horrible when I was first diagnosed, felt awful-just crashed, could hardly move, had many different tests, swelled up. Finally docs said scleroderma. Doing so much better now, have mostly learned to live with, manage it. A big question I have is that my rheumatologist said there are no drugs to target the actual immune response (as in RA for example). She says they can only treat the effects, symptoms) I have taken thyroid medication since my 50's. The only med directly related to scleroderma is pantoprazole for upper GI issues, started a few months ago when reflux worsened. In reading the discussions I see many drugs mentioned for scleroderma. Is it true what my doc told me, that they can't suppress the actual immune response in this disease?

@80skw “Can any of the drugs meant for scleroderma suppress the actual immune response?”I honestly don’t know the answer, sorry. I am not knowledgeable of all the drugs which treat autoimmune illnesses, but let’s ask the other folks in this discussion.
Can anyone help?

I'm sorry to hear you've been diagnosed with scleroderma. It's a difficult disease to manage. Many of the medications used in rheumatoid arthritis are also used in scleroderma. Mycophenolate is used to reduce the immune system's response and reduce inflamation, and newer drugs like Jascayd are used to slow the scarring process in the lungs, which is usually the primary cause of death in this disease.

@80skw

Methotrexate, which is RA drug, is prescribed for scleroderma. Also, Actemra and Rituximab (both RA drugs) are prescribed for ILD lung disease in scleroderma. Mycophenolate or Myfortic are also prescribed for skin and lung involvement. Your doctor is correct, none of these drugs were originally developed for scleroderma. They are used as immunosuppressive agents already approved for other indications.

How did you manage to get better without taking immunosuppressive medications?
Usually, patients are started on methotrexate, if joint stiffness and skin involvement are present. Then Cellcept (mycophenolate) is added. If you are not taking any medications but Pantoprazole, you may want to ask for oral mycophenolate to stabilize the disease. It has some side effects, as all drugs do. Methotrexate is a chemo drug, self-injected. It may have more side effects but can also be more helpful with symptoms of arthritis. Talk to your doctor or find another rheumy who treats scleroderma.

My rheumatologist ..did something odd.. my SCL-70 was up (like 1.2-1.4) and the first time I saw him was on TV (He was in NY and I'm in OK) and I was quizzing him about homogeneous titer.. he said "why are you asking me questions my medical student should be asking me.??" and then he looked at something and shed some tears..I thought "he's so nice and he's gonna have to tell me I'm gonna die".. so I just said ..well..(I'm a big girl.. a real trooper ..lost 2 husbands ..no children and I was 68 at the time).. he said "it's a miracle , you don't have it..you're symptoms are really gastro (and they were so BAD)... next year same thing..only I saw him in person.. nicest man.. we Praised the Lord and spoke in tongues.. and said come back in a year..meantime.. gastro.. and it was so bad..I lost alot of weight.. got down to 98 lbs.. had developed pyloric stenosis.. and a tortious colon.. so the 3rd year.. he had restructured his office.. he was still at the VA in NY but was in that day.. but I saw an intern..meantime the pyloric stenosis was fixed!! (only botoxed 3 times and God fixed the tortous colon ( the surgeon said whatever you're doing.. keep doing it.. biofeed back or what..and I said the Word works.. no surgery).. but I'd gained alot of weight.. so I asked this intern.. "well it's testing higher..but and I guess we can ruel scleroderma out now.. he replied "NO" so I said "I guess I'll either have kidney failure or a heart attack and die ..and he said YES..NOW we get to the kidney stones..passed a real biggie.. took 2 1/2 months 10.7 mm.. whew!! And then to a nephrologist..I have been in 3rd stage kidney failure for 3 years.. no one told me.. I read my own charts.. who said GET OFF THAT PANTAPROZOLE NOW!! Whew.. gastritis so bad I requested an EDG.( I have finally found a great gastro).. he said that Pantoprazole really messes up your kidneys.. so the 4th year I went back to the rheumatologist and got a different intern (I hadn't died yet) and he actually did the touching and had a little machine and said .."you have fibromyalgia with a WPI of 19..and I asked "is that a GOOD score" and they don't treat it and he didn't answer.. so I, of course looked it up..and it was the worst score..so now I am finding a new rheumatologist.. we live very rural so this is real hard..in the meantime I finally went to se the allergist ..(3 years in the making ) and she said rule out alpha gal..and we did and now its CSU Chromic Spontaneous Urticaria..take 40 mg pepcid and 4 claritins a day.. waiting to qualify for Xolair shot..I'm 72 now....I find that the 40 mg of Pepcid des control the gastritis ok.. after weaning off the Pantoprazole (nephrologist did not tell me to wean off)... I eat a very restrictive diet..take Trulance and VSL-3 probitoics and drink 2 plant based Ensues a day (NO sucralose.. not sure where I'm at .. but still breathing ..and still standing on the Stripes of Jesus who is the real healer..good thing..because this has been a strange and difficult road.. praying for everyone on here..the medical care systems seems to be sort of maimed or broken.. God bless you all!!

@altabiznet
Wow, all those meds! I feel somewhat overwhelmed.
But I will try to answer the question about how I got better. At first my PC doc had me on (lisinopril?) to reduce the swelling (edema?) in legs,ankles,feet. And started oral iron supplements (blood values were low). And I think a steroid for a short time. I am afraid I may have blocked out some of that time in some denial or something. I have always eaten a healthy diet but I altered that somewhat to try to alleviate GI symptoms. Oh yes - gi doc had me on an antibiotic to reduce bacterial overgrowth (had a lot of diarrhea). I tried to continue/increase exercise as I became able. And then, I don't know-just got better.
I guess I have a mild version of the disease. Even now I have periods of flare up and regression. I asked Rheumatologist if I could have been misdiagnosed. She said I had all the antibodies, blood indicators of scleroderma. So, don't know. I have sometimes thought that my Rheumatologist is restricted in what meds she can use by the HMO and is not able to use newer, maybe experimental ones.
Anyway, thank you very much for your answer. I am trying to learn everything I can. It can be hard to discern legitimate, scientifically supported sites, advice.

@80skw Please check out the Scleroderma Foundation information on YouTube.
I am sending you my best wishes for navigating this difficult autoimmune illness.

Is anyone currently being treated with JASCAYD? What type of insurance covers that drug?