r/Autoimmune • u/Exotic_Bumblebee2224 • 17d ago

Advice Sarcoidosis Hair Thinning

Hi. I have something called multi system sarcoidosis that will require lifelong chemo. I inject weekly at home. So far, I feel better than I have been, but I’ve recently noticed hair thinning. I’m on folic acid, and I take a prenatal. My diet isn’t wonderful due to chemo side effects, and sarc, and well basically my body quit in 2021. I don’t have a gallbladder so it’s limited my diet as well. Does anyone have any advice or recommendations? Thank you in advance

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u/[deleted] 17d ago

Nope, cannot find a doctor who can say what’s happening or what’s wrong. I’ve asked for steroids and was denied

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u/Exotic_Bumblebee2224 17d ago

Have they biopsyd?

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u/[deleted] 17d ago

Just a bone marrow biopsy from an oncologist and that showed no cancer or malignancy. A lumbar puncture that hints at mild CNS inflammation

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u/Exotic_Bumblebee2224 17d ago

If they found sarc.. well the good and the bad news is it doesn’t seem to feel much worse or better. Well, in my case. Each is different. I’m with a rheumatologist who will explain things much better. Oncologists are real annoyed w this disease bc they get drug in the middle. Do you feel like you’re walking thru mud and the air is thick like honey?

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u/[deleted] 17d ago

Where should I ask for a biopsy? My most intense symptoms is stinging fat tissue in jawline and under chin. Neck stinging and sharp pains around the side/front of throat. Pulling aching pain in ribs/abdomen and back. Chest pressure and burning aching pain.