Scleroderma SSc 12 years & counting

Posted by sclerobarbiie3 @sclerobarbiie3, 3 days ago

Hi, I've been battling SSc - diffuse systemic scleroderma for 12 years now. I am 34 years old. 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. Thinking my heart is starting to have symptoms. Low heart beats with low oxygen upon activity (just walking). Anyone else? Is this heart failure? I would like to know your journey as well. Lotions, cream, bandages, anything that has helped you with our symptoms and battles. The more information to help each other- the better. Thank you.

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Alta Net | @altabiznet | 1 day ago

Hi, I am sorry to hear about your many symptoms. Your heart condition may be due to multiple factors, like chronic fatigue, or anemia (iron deficiency or Vit B12 deficiency), or ILD worsening, or possibly inflammation in the heart with neuropathy and arrhythmias, that can happen with SSc. You are on many medications, that also may be causing this side effect. Varied diet and multi-vitamin supplements plus iron may be helpful.
Heart failure is usually associated with shortness of breath at rest. It is best to see your doctors and go over the list of all medications and possibly do additional tests, starting with pulmonologist, cardiologist, and rheumatologist. Just some thoughts. Blood tests vs. echocardiogram vs. PFTs may help to differentiate and select appropriate therapy.
Please keep posting your experience. Best of luck

itat | @itat | 1 day ago

I'm so sorry you're having so many complications; you're a true warrior. I don't know if you've tried other alternatives, obviously without abandoning your medical treatment. I personally follow an anti-inflammatory diet that my husband put me on. He was the one who detected the disease long before any doctor diagnosed me. I've had Raynaud's, tinnitus, and skin involvement since I was 20, which is why I've been going to a rheumatologist since then. I'm 41 now, and it was at 40 that the rheumatologist finally diagnosed me with the disease due to the pulmonary involvement. My husband tells me that the disease requires medication, but that I must help my body not add more stress to the problem. If I can eat an anti-inflammatory diet, that helps prevent further inflammation. If I have heartburn, eating foods that help control it also helps, so I adjust my diet accordingly. Mainly, I avoid gluten and red meat. Something to keep in mind is that not everything works the same for everyone, but when it comes to simple remedies, it's good to try. As we say in Cuba, the worst thing you can do is nothing. Perhaps you could try something like this: https://myartofwellness.com/how-to-treat-scleroderma-with-acupuncture-and-tcm/. I'm not recommending any specific place because I don't know any; I'm just sending you this link so you can see what they do. I hope you gradually improve.

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