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?
Hi, 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.
Hi, 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.
Hi, 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.
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?
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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
Hi, 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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2 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?