Connect
← Return to Anyone with Systemic Sclerosis or Scleroderma?
Discussion
Anyone with Systemic Sclerosis or Scleroderma?
Autoimmune Diseases | Last Active: 48 minutes ago | Replies (14)Comment receiving replies
@altabiznet I was diagnosed with systemic scleraderma during covid. It has mostly been dormant but I do have Raynauds phenomenon and Sjogrens. I have troubke with my digestive system like gastritis once and had polyps that would have turned into bleeding ulcers. I have trouble swallowing sometimes and with the Raynauds my hands and feet stay cold and I have the White red color change with that. Now my fingertips are starting to go numb I thought maybe thats the scleraderma starting up. Im 64 and know the survival rate declines with people over 60. I hope if it comes out that its slow and not aggressive. Good Luck
Replies to "@altabiznet I was diagnosed with systemic scleraderma during covid. It has mostly been dormant but I..."
@kimbo2020 I am 84 years old, diagnosed with systemic scleroderma decades ago. My Raynauds has indeed become more symptomatic with age. However, I am a frequent user of hand warmers all year. I try to follow the advice not to let my hands get cold.
Hand warmers in pockets, backpacks all the time. Just in case. I also explain when necessary that my fingers don’t work well when cold.
Connect
@kimbo2020
Scleroderma can be slow progressing. Hopefully, this will be your case.
I was diagnosed on 2022, one year post COVID vaccine in 2021. It started exactly like you are describing with Raynaud's, purple and white fingers and a little bit of GI distress. Then within another 2.5 years it progressed into the skin (discolorations, thickening), hands and fingers, and then into knees and shoulders - joints swelling, stiffness, restricted movement, fatigue. I have tried Methotrexate, mycophenolate, and Actemra, before going into transplant.
The drugs are only slowing down the progression, but do not treat this disease. Based on my experience, Methotrexate worked on joints, but not on skin. Mycophenolate has effect on skin, but not on joints. It may be a good option to stay on those drugs, when prescribed, as they are less toxic than biologics.
Actemra (biologic for Interstitial Lung Disease and arthritis) worked on both skin and joints, but it was hard to tolerate after 4 months with GI distress - this is when I started seeing improvements - reversal of skin thickening.
After 8 months on Actemra and 4 months on Humira, I did autologous Stem Cell Transplant at Duke. Post-transplant recovery is a very long and difficult process - something to consider before doing it (and if doing it). 11 months post-transplant, my hands are still affected by scleroderma. My skin is getting a little bit lighter in affected areas, but some substantial scleroderma spots still remain. Fatigue and joint stiffness remain. Research opportunities may be a better way to go.
More advanced treatments (also with toxicities to consider) are available now via clinical trials, one is CAR-T treatment for scleroderma. May be approved in 2-3- years. There are also multiple drugs in clinical trials - see presentation at Scleroderma Research Foundation:
https://srfcure.org/living-with-scleroderma/patient-forum/
You can research clinical trials for systemic scleroderma posted on: http://www.clinicaltrials.gov
The website provides contact information for participating sites