1. < Autoimmune Diseases

Anyone have Scleroderma?

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 19, 2020
In reply to @sickirishlass "Hello, I also have Scloderma & Raynoids, & T1D for 49years, hypothyroid, RA, esophagitis, gastroparesis, and..." + (show)
@sickirishlass

Hello, I also have Scloderma & Raynoids, & T1D for 49years, hypothyroid, RA, esophagitis, gastroparesis, and digestive problems. The Raynaud’s started around 1998-1999, with a sore one my index finger that took over 6 months to heal. By 2007 I was diagnosed with HERS 2 breast Cancer , after a year of Chemo, Herceptin, I was cancer Free 👍 in December of 2019 I was hospitalized at first I was admitted for a low hemoglobin 6.8, my Right are was very swollen and Hard . All the doctors were very confused about it , called an infectious Disease doctor. Well I was then told I had cellulitis . After weeks of receiving IV treatments of antibiotics & myself researching , I came up with: it was Scloderma, at the next visit w/ the infectious Disease doctor I had asked “ could this be Scloderma? The Doctor then asked how long have u had this ? Since before 2008 . He the discharged me from his care & sent me to a rheumatologist, this doctor then set me up with an appointment w/ the Scleroderma Foundation @ Northwestern Hospital in Chicago. My Arm is still very tight $ a bit swollen. I can no longer straighten it ! I very hopefully I’ll get answers tomorrow 🤞🏻🤞🏻👍

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

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1 reply
marye2 | @marye2 | May 19, 2020
In reply to @modelmiche "hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one..." + (show)
@modelmiche

hi I have scleroderma and have had symptoms for 12 years. I was officially diagnosed one year ago. My mouth has gotten considerably smaller but not physically noticeable yet from outsiders. I am very anxious about this & wonder if this will get worse with time? I also have raynaud's disease, chronic fatigue, Scleroderma esophagus, dry eyes, dry mouth, depression, anxiety, etc. Any info about the mouth issue or anything else related to Scleroderma is greatly appreciated.

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Look into TMJ issues if you are unable to open your mouth wide...

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sickirishlass | @sickirishlass | Jul 7, 2020
In reply to @johnbishop "@dycota13 There are a few other discussion where you can find other members discussing similar treatments...." + (show)
@johnbishop

@dycota13 There are a few other discussion where you can find other members discussing similar treatments. You might want to post questions to see if someone can share their experience or helpful information.

> Groups > Autoimmune Diseases > Raynaud's Syndrome
-- https://connect.mayoclinic.org/discussion/raynauds-syndrome/
> Groups > Autoimmune Diseases> Scleroderma and Raynauds
-- https://connect.mayoclinic.org/discussion/scleroderma-and-raynauds/
> Groups > Bones, Joints & Muscles > Morton's Neuroma
-- https://connect.mayoclinic.org/discussion/mortons-neuroma-209f16/

Another seach tool I use that can be helpful for finding medical research types of information is Google Scholar -- https://scholar.google.com/. It allows you to sort the links by year so that you can find the latest information easier.

Hope you find some answers and can give us an update after you meet with your new scleroderma team at UCSF.

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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 ?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 7, 2020
In reply to @sickirishlass "Ty, John for all the Groups listed, I’m very anxious, to read them all, I too..." + (show)
@sickirishlass

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 ?

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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/

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 10, 2020
In reply to @sickirishlass "Ty, John for all the Groups listed, I’m very anxious, to read them all, I too..." + (show)
@sickirishlass

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 ?

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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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1 reply
sickirishlass | @sickirishlass | Jul 11, 2020
In reply to @becsbuddy "Hi, @sickirishlass . I was put on CellCept several years ago. It was supposed to act..." + (show)
@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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cgs300 | @cgs300 | Feb 13, 2021
In reply to @colleenyoung "@sickirishlass, I, too, hope you get answers. Please post an update." + (show)
@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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 14, 2021
In reply to @cgs300 "I am new to this group. Diagnosed 5 years ago with Scleroderma, Sjogrens and Raynauds. Had..." + (show)
@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?

REPLY
threadsandbows | @threadsandbows | Sep 1, 2022
In reply to @johnbishop "@dycota13 There are a few other discussion where you can find other members discussing similar treatments...." + (show)
@johnbishop

@dycota13 There are a few other discussion where you can find other members discussing similar treatments. You might want to post questions to see if someone can share their experience or helpful information.

> Groups > Autoimmune Diseases > Raynaud's Syndrome
-- https://connect.mayoclinic.org/discussion/raynauds-syndrome/
> Groups > Autoimmune Diseases> Scleroderma and Raynauds
-- https://connect.mayoclinic.org/discussion/scleroderma-and-raynauds/
> Groups > Bones, Joints & Muscles > Morton's Neuroma
-- https://connect.mayoclinic.org/discussion/mortons-neuroma-209f16/

Another seach tool I use that can be helpful for finding medical research types of information is Google Scholar -- https://scholar.google.com/. It allows you to sort the links by year so that you can find the latest information easier.

Hope you find some answers and can give us an update after you meet with your new scleroderma team at UCSF.

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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.

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vsunshine | @vsunshine | Dec 10, 2022

Has anyone been diagnosed with scleroderma?

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