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I have sarcoidosis (cardiac w/pacemaker) which is an inflammatory/autoimmune disease. It sometimes goes hand in hand with lymphoma (and other diseases) because the body is in a constant state of inflammation which makes it susceptible to other illnesses (including cancer.) I started getting dime-sized red sores on both shoulders about three years ago which have since spread to all over my back with a few on my arms, legs and stomach, one on my face and one on my lower lip. I've had eight skin biopsies which all (except one) came back as probable lichen planus, an idiopathic autoimmune skin disease. (I don't believe that is correct because LP normally is in sun-exposed areas, is a bumpy purple/red rash, shows up on wrists and ankles first, and is very itchy. My spots don't meet any of those requirements.) The eighth biopsy came back as pigmented purpuric dermatosis (instead of LP.) Both PPD and LP can mimic cutaneous T-cell lymphoma so it must be ruled out. I'm now waiting for TCR testing on the PPD biopsy sample.
I'm trying to get in to rheumatology because my research shows my symptoms could fit Lupus, Rheumatoid Arthritis, Amyloidosis and Cryoglobulinemia as well CTCL. I have lots of neurological issues, brain fog, severe fatigue, joint and muscle pain, vision changes in addition to the skin lesions (one of which was biopsied a year ago and still hasn't healed.)
Replies to "I have sarcoidosis (cardiac w/pacemaker) which is an inflammatory/autoimmune disease. It sometimes goes hand in hand..."
@jmhilde61 Hello. I came across your post because I’m going through a very similar experience.
I was diagnosed with cutaneous sarcoidosis, and like you, I have red and pink bumps on my back, arms, and legs that keep spreading. At first, my doctors also thought it was lichen planus, but after further biopsies, the diagnosis was changed to cutaneous sarcoidosis.
I’ve already tried cortisone, Plaquenil, and methotrexate, but unfortunately none of them have helped, and my skin has continued to get worse.
May I ask what treatment worked for you? Were you eventually able to get the red and pink bumps under control or clear them? I would be so grateful if you could share your experience, as I’m feeling quite discouraged and I’m looking for hope from someone who has been through something similar.
Thank you so much in advance.
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Thank you for your comment. I also super from many auto immune disorders. Graves. Endometriosis. Had a firm of Guillan Barre 2016 in wheelchair for almost a year(?- still unsure of that dx) pituitary tumor partially removed in 2021.. then in early 2023 I started an issue with skin changes and we tried meds but I turned down skin dr and biopsies at that time. I truly thought it was going to go away. But since I've added many other issues in last 2 years so I'm being investigated for amyloidosis; but really wondering if this rash started any new disorder that's internal trying to warn me. I also have vocal problems for at least 4 years. Most days my voice is hoarse and hardly there. I have bilateral carpal tunnel just had surgery on right. I am sick most every day and have issues with eating and sick feeling within minutes of eating. If I exercise I lose my breath and get dizzy and heart races. It's just a big plop of tons of crazy things from all the ends of the body; BUT I know I'm lucky to be here and really I just want to get an answer treatment and let's get on with life again! Really like to work again and just be a part of life out of the house again! I hope you can find answers or are doing OK and have some form of remedy so you feel OK each day?