Anyone with Systemic Sclerosis or Scleroderma?

@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

@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

See a presentation of ongoing clinical trials in scleroderma by Dr. Khanna from University of Michigan and Dr. Gordon from SRF posted on Scleroderma Research Foundation website, under patient forum.

@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.

@jerce

Thank you for sharing. What are your other symptoms and treatments for scleroderma? Do you have skin thickening and pigmented discolorations? Do you have stiff joints with swelling? Any GI involvement like difficulty swallowing and lower abdomen cramps?

Did you take any prescription medications for these symptoms?

Any information regarding symptoms, progression, your level of physical activity, and treatments - is much appreciated.

I have rapidly progressing scleroderma only 3.5 years post diagnosis. The doctors say that it may slow down over time. I am trying to understand the disease.

@altabiznet Other symptoms of scleroderma. I am chuck because the old CREST diagnosis is so helpful in pointing out the possibilities. Yes. Thickening skin on fingers. My grandmother could no longer decipher Braille…probably due to this disease. Esophageal dysfunction. Yes. I am now on a campaign to chew thoroughly, drink liquids as I eat. Also to take my GERD meds early in the evening with the final meal. Otherwise, it’s food stuck in the esophagus, horrible painful reflux when I try to sleep.
2 knee replacements.
There is now excellent info on the the internet on the Tang…which has now started nosebleeds.

Check out the Scleroderma organization. They offer many educational videos and often workshops at my hospital.

However, it is important to know that CREST or systemic scleroderma is very unpredictable in its affect on patients.

I am wishing you the easiest tussle with our mysterious autoimmune disease.