Anyone with Systemic Sclerosis or Scleroderma?

@altabiznet
Constipation then after a few days gas and diarrhea. I take Metamucil every other day, probiotic daily.

I have what they feel is Crest. A bit if all. Lupus numbers are very small. Thank goodness! I've had so many issues. Raynouds disease is bad. I got all this after covid vaccine in 2020. I do not take boosters since it was so bad in my opinion getting all this! Extremely tired, pain always because of Fibromyalgia that I have. I have small vessel disease and have had several ischemic strokes and they were not bad ones though in left and right hemispheres , I got back talking and balance issues. Sometimes it took about 8 months to regain things back. My Rheumatologist is in John Hopkins and he's such a great dr.. messages me all the time. I live about 2.5 hours away from there. I have antiphospholipid syndrome as well. So Hematologist is here for now. They just took photos of my chest , throat and pelvic Pet scan with radio active solution and I have cancer that has matasised 4.5 cm one in left lung and 2.4 cm one in pelvic area. They want a sonogram of my thyroid as it seems off.. Having this issue with all these connective tissue diseases makes whole team needs to help and its much more complicated to treat. If I have no good results from treatment I only have a few months to live. It's hard to deal with watching my PA daughter be devastated about it. My husband is great though. He is supporting and I'll do whatever my daughter wants from me as she has CT and stress can effect flares for her. She has autoimmune diseases as well. Different from mine..
Take care if yourself to all.

@altabiznet
In 1992 I used methotrexate injections 2 years. I was so fatigued that I stopped the injections. I have Raynaud’s, so I take Nefedipine during winter months. It works great, no cold toes or fingers. I take Protonix for Gerd’s and raise the head of my bed. I chose not to take auto immune meds, and just treat the symptoms. I have thick skin and stiff joints. My GI track is affected. Swallowing problems have caused me to have several throat dilitations, Gerds, slow colon, and now rectal incontinence. I am a RN and left work on disability. I follow the Mediterranean Diet, as I am allergic to Soy. I read labels as Soy inflames my body and causes diarrhea and itching. Fresh and no processed foods are best for me.

@36yrswss

Incontinence at this stage may be due to GI inflammation and fibrosis. This condition may be similar to Crohn's or colitis. Have you tried Humira? This drug is prescribed for both indications. Your GI doctor may consider prescribing it based on your symptoms.
May be worth checking symptoms for Crohn's and ulcerative colitis to see if your condition falls into that category. Humira may help.

@36yrswss

@36yrswss

This sounds like mixed type Irritable Bowel Syndrome IBS. OTC medications like Pepto Bismol may help during gas and diarrheal episodes. Senokot, Dulcolax, MiraLAX, or Milk of Magnesia may work for constipation. They usually work within 12 hrs or the next day - to be careful not to overdo it.
Avoiding milk products, gluten, fatty and fried foods may help as well.
You definitely need to see GI doctor as soon as possible. More likely, they will prescribe endoscopy and colonoscopy to take biopsies and for definitive diagnosis.

@taylor05

Truly hope you have good results from your treatments.
I also have CREST - multi system autoimmune involvement post COVID vaccine in 2021: chronic fatigue, skin thickening, joints stiffness, GI that feels like Irritable Bowel Disease. My Raynaud and scleroderma started in 2022, exactly 1 year post COVID vaccine.
Currently I am 14 months post stem cell transplant for scleroderma (done at Duke), on no medications, but considering going back on biologics due to progression and worsening of my multiple symptoms, including joints and GI.
There are multiple trials for new scleroderma drugs posted on the web at http://www.clinicaltrials.gov. Some are ongoing at John Hopkins as well. Hope, something will be getting approved soon enough so that we all can benefit.

I thank you! It probably will get me being so aggressive and it's in 2
places now. Maybe more. I have a lot of the bad symptoms from Connective
Tissue Disease as well.. Much luck to you!!! Your risk increases with
CTD. Sleraderma and Sjögren's are the ones it increases the risk from. I
know something was going to get me in a couple more years anyway with
damage from them. Take care!!
Praying for you 🙏 ❤️
Nadine