Anyone have Scleroderma?
I have Morton’s neuromas bilateral feet. I had them removed seven years ago but they are back. Since their first removal, I was diagnosed with scleroderma. I’m wondering if this diagnosis will affect the recovery process as last time, it was horrible. I have severe Raynauds only at this point in my disease.
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@sickirishlass, I, too, hope you get answers. Please post an update.
Look into TMJ issues if you are unable to open your mouth wide...
Ty, John for all the Groups listed, I’m very anxious, to read them all, I too have Raynaud’s & Scleraderma plus Barrett’s esophagitis, T1D(49yrs) Hypothyroidism, RA, severe anemia, Post HERS2 Breast Cancer W/Chemo & radiation & 2 sarcoma removed All right breast.
I’ve had phone call visits from Northwestern/ Scloderma Clinc (Chicago) I finally get to see one of these Doctors on July 28th, in the mean time they started me on Mycophenolate Mofetil , have you heard of this being used on Scleraderma patients ?
Hello @sickirishlass, That's great news that you get to see the doctor July 28th. I am not familiar with CellCept (or mycophenolate mofetil) but found an article that discusses the use for Scleroderma patients.
How Can CellCept Help Scleroderma Patients?: https://sclerodermanews.com/2017/06/14/what-is-cellcept-and-how-could-it-help-scleroderma-patients/
Hi, @sickirishlass . I was put on CellCept several years ago. It was supposed to act like prednisone without the bad side effects . I slowly tapered off the prednisone and then had a big crash because CellCept wasn’t doing it’s job. Now I’m getting rituxan infusions and it’s doing a great job. I know that CellCept works for some autoimmune diseases and I just hope that yours is one of them
I take CellCept 3X daily for the last year, I also take protonix 2X daily . So far So Good, at the moment I am in a JTube feeding tube for the next 10 weeks. Due to a bleeding ulcer in my esophagus. Only Clear liquids allowed . My stomach hasn’t felt this good for a Very Long time
I am new to this group. Diagnosed 5 years ago with Scleroderma, Sjogrens and Raynauds. Had my second Pfizer vaccine shot 3 days ago. Have had no reaction to either first or second shot. Everyone I know has had significant 2nd shot reaction. What does “no reaction” mean for me being 95% Covid protected beyond the next 2 weeks? Would be helpful if someone were collecting data on Scleroderma patients and reactions to shots, as well as demonstrated future Covid protection for those with Scleroderma.
Hi @cgs300, welcome to Mayo Clinic Connect. A reaction to a vaccine does not mean that person is more protected than someone who doesn't have a reaction. Most people have not had a reaction to either shot of the Pfizer or Moderna vaccines.
Read more here:
- Coronavirus FAQs: If I Have No Post-Vaccine Pain, Is It Working https://www.npr.org/sections/goatsandsoda/2021/02/12/967338697/coronavirus-faqs-if-i-have-no-post-vaccine-pain-is-it-working-plus-goat-dilemma
- COVID-19 vaccines: Get the facts https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-vaccine/art-20484859
You can also follow Dr. Gregory Poland, Mayo Clinic Infectious Diseases specialist, as he answer questions about COVID, the vaccine and more. https://connect.mayoclinic.org/page/podcasts/
Now, back to you. What are your biggest challenges living with scleroderma, Sjogren's and Raynaud's? What tips would you offer others?
Thank you for your suggestion of scholar.google search. I have read everything I could find on the internet about PAH and just recently put the lung diseases and scleroderma the main cause of the PAH. The scholar.google was very helpful. My husband and I are both 69 years and he was diagnosed with PAH in April.
Has anyone been diagnosed with scleroderma?