Scleroderma, Limited

Posted by dycota13 @dycota13, Aug 18, 2019

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.

@becsbuddy

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

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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

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@fourof5zs

Just wondering if you have tried physical therapy for the neuromas. I had a flare up last year.. turns out a new small neuroma. I did physical therapy and things are much better. Still pain, but bearable and I can walk or stand for 30-40 minutes. My therapist used needles similar to acupuncture with a tens machine and a few other things… but the needles with the tens machine helped the most. You may have to ask around as to who does physical therapy on feet. First person I got knew very little, but knew someone who knew a lot about it. Acupuncture might be an option for you. We do not have one in my town.., well there is one for dogs, but that doesn't help me. I will take this over having surgery again. It was a six month recovery for me in 2012.

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I have to under go bunion surgery in a few weeks. I am so scared because I have OCD and walk to relieve anxiety. Is there any other alternative for severe foot pain caused by bunions on both feet? Has anyone heard of stem cell shots for foot pain?

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@mariajean03

I have to under go bunion surgery in a few weeks. I am so scared because I have OCD and walk to relieve anxiety. Is there any other alternative for severe foot pain caused by bunions on both feet? Has anyone heard of stem cell shots for foot pain?

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No I haven't. Dr. said physical therapy will follow my surgery. I will ask my family Dr. next week. Thanks!

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@mariajean03

I have to under go bunion surgery in a few weeks. I am so scared because I have OCD and walk to relieve anxiety. Is there any other alternative for severe foot pain caused by bunions on both feet? Has anyone heard of stem cell shots for foot pain?

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Hello @mariajean03, Welcome to Mayo Clinic Connect. I can understand your anxiety about your upcoming foot surgery. I think that's pretty normal for all of us. There is some information you might find helpful on the treatment for bunions on Mayo Clinic's website here:
https://www.mayoclinic.org/diseases-conditions/bunions/diagnosis-treatment/drc-20354805 — Also, here are some questions and answers you might find helpful — Mayo Clinic Q and A: Treating bunions: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treating-bunions/

I have no medical background or training but I would be wary of stem cell treatments for bunions. Excerpt from link below… "Currently, the only stem cell treatments approved by the Food and Drug Administration (FDA) are products that treat certain cancers and disorders of the blood and immune system."
Stem Cell and Exosome Products – Warning about unapproved therapies: https://www.cdc.gov/hai/outbreaks/stem-cell-products.html

There is a discussion on OCD that you may want to read and meet other members discussing OCD — https://connect.mayoclinic.org/discussion/ocd-1/

@mariajean03 have you tried or found any other activities that help to relieve your anxiety?

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No. I've been walking for 40 years. Thanks for the stem cell update! Maria.

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@colleenyoung

@sickirishlass, I, too, hope you get answers. Please post an update.

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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.

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@cgs300

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.

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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?

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