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Scleroderma (Systemic Sclerosis): Anyone else?
Struggling with multiple issues
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Does this sound like autonomic neuropathy?
Post stem cell transplant for scleroderma, which involved high dose chemo/radiation and steroids, I have very limited ability to walk that so far was not diagnosed as why. As I start walking at a normal pace, my lower abdomen gets tense, dizziness, my blood pressure goes up, shortness of breath, confusion, tingling. I also have some muscle weakness in the arms and legs and muscle wasting. Pins and needles with tingling. My Systemic Sclerosis may be causing this, or possibly a complication post chemo/radiation - autoimmune neuropathy? Does this sound like Chronic Idiopathic Demyelinating Polyneuropathy CIDP?
Any insights will help. Thank you
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2 ReactionsHi, I've been battling SSc for 12 years now. I also have sjogren's syndrome, Fibromyalgia, Interstitial lung disease (ILD), Hashimoto's thyroiditis -hypothyroidism (underactive thyroid), Arthritis, Raynaud's phenomenon, Gastroesophageal reflux disease (GERD), IBS- Irritable bowel syndrome, Schatzki ring, Small mouth (microstomia), Sclerodactyly-permanent contractures, Arms permanent contractures, Digital Ulcers, Calcinosis Cutis, Pulmonary Arterial Hypertension (PAH), whole body skin involvement- tightening, discoloration (pigmentation changes), seborrheic dermatitis, telangiectasia, Facial Changes, unable to move certain joints (wrists & most fingers), thyroid nodules, heart block, heart arrhythmia, depression and anemia. That covers most, I believe. Medications I take are CellCept, Sulcrafate, Sulindac,
Gabapentin, Baclofen, Duloxetine, Pantoprazole, Famitodine, Sildenafil, docusate sodium, oxygen 2 liters, Indomethacin, oxycodone, and rituximab infusions. OTC- vitamin b12, Tylenol, ibuprofen, probiotic and prebiotic, aspirin low dose. Waiting on a new pulmonologist for medication. I've tried a lot of treatments in my years; unfortunately my case is a difficult one. Loosing my hair; besides everything else.
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3 Reactions@sclerobarbiie3 I want you to know that I am so sorry that you have so many health problems in addition to systemic scleroderma.
My scleroderma is like a milk fed puppy compared to so many of us.
@sclerobarbiie3
Hi, thank you for sharing.
What is your dose and schedule for Rituximab?
Is it prescribed for RA or for SSc?
What kind of side effects post Rituximab infusions?
@kimberlyf
You need to see a pulmonologist for worsening of lung condition. They can prescribe OFEV. Methotrexate + Cellcept is a standard of care therapy, but it does not always work. It is important not to stop your current medications until you have new therapy prescribed.
CAR-T therapy in clinical trials may be a good alternative. They report promising results. You can find studies for systemic sclerosis on http://www.clinicaltrials.gov.
Also check out the YouTube informative videos posted by the Scleroderma Foundation. I was diagnosed over 20 years ago. Still learning to manage the array of symptoms.
Yesterday received my order of 60 hand warmers for Reynauds needed all year- cold in the winter and air conditioning the summer/ no housing heat to speak of spring and summer.
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3 Reactions@jerce
Hi, I was diagnosed 4 years ago with systemic sclerosis and ever since has been progressing rapidly, even post autologous stem cell transplant plus chemoradiation, which I think only made me worse. I was much slower progressing before the transplant.
You have survived this condition for 20 years! Can you please share your scleroderma journey, your symptoms and treatments at diagnosis, and how your treatments and skin/joints/mobility were progressing from there.
I hope, you are doing well.
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2 Reactions@altabiznet I decided to check: I was diagnosed with scleroderma 27 years ago. That was the year that Maureen Mayes M.D. published her “Scleroderma Book.”
I think that the other name for this autoimmune illness is: Anything Can Happen.
That is why my journey is only relevant to me. There has been much scientific research since my diagnosis. I have learned how lucky I have been to be spared most of the symptoms plaguing members of support group I attended briefly.
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2 ReactionsWhen scleroderma affects skin only, it can be slow progressing over the course of 20+ years.
However, when fast progressing, it can be a devastating condition with constricted hands, peeling skin, eye inflammation, ILD, limited range of motion, peripheral neuropathy, myopathy, and joint swelling with inflammatory arthritis. GERD and GI fibrosis is another very bad complication. Raynaud's disease frequently accompanies scleroderma.
Luckily, not every patient gets all the symptoms at once.
The treatment choices are limited to methotrexate, cellcept/myfortic, Actemra and OFEV for ILD, and now Rituximab (off label). New promising CAR-T therapies are available in clinical trials only. New oral therapies are also under development in clinical trials. Expecting new drug approval within the next 1-3 years.
http://www.clinicaltrials.gov
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1 Reaction@sclerobarbiie3
So so sorry! I have alot, but you have more to handle. Prayers!!!