APS w/SLE 'Anyone know what these spots are called?
They burn. Doctors unsure what to call them, not giving me a straight answer. Planquenil made them worse, I've stopped taking Planquenil for three days but spots are intensifying! Help?
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They look sort of like mine. If the larger spots have little lines, like a plowed field, with a second set of lines like #### 60/30 degrees, that would be macular skin, perhaps from Amyloidosis of some kind. The smaller look like petechiae, blood vessels that get fragile and break just below the surface. Actually, just a guess, but the do look a lot like mine, and the larger spots erupt and ooze pus or blood occasionally for a few days.
Hello @thunder_dog88 — I had reddish brown spots on my legs similar to yours but I had no pain. I do have lymphedema in the legs which I think may be the cause of mine. I did find some information on Mayo Clinic's site about spots on the legs.
Vasculitis – Symptoms and Causes:
I also found some side effects that you could discuss with your doctor if the drug is making it worse.
FDA Adverse Events Summary for PLAQUENIL* (Hydroxychloroquine sulfate)
Are you able to get a second opinion?
Here is a better pic. No, no pus or bleeding, just burning pain like I stepped into very hot water or severe sunburn, it feels like tingling, and have muscle spasms, stings like biting flies. The skin has changed color, lots of neuropathy. Hurt to stand on for very long, I mostly sit on couch with them up. I'm seeking a diagnosis so I can get a treatment plan to fix it so I can go back to work. Right now, doctors seem stumped.
Thank you. I checked both sites out. It doesn't look like there's a cure. 🙁
It looks most like 'mixed cryogobulinemia' with non-hepititis SLE and APS. The cure is plasmapharesis. Where can I get that?!
The National Organization for Rare Disorders has some information on their site that may help.
@thunder_dog88 Can you discuss the plasmapharesis treatment with your doctor?
I get spots like this once in a while. I was confirmed that I have leukocytoclastic vasculitis. I also have sjogrens, r.a. and now cryoglobulinemia as well. They all seem to blend together. When I get my flares it hurts to walk and have to use a cane. Most of the time the flare lasts a couple days.
From mid shin, both of my legs looked like that. If I had scratched EVERYTHING that itched it would “travel” and nobody knew what it was. Felt like “stinging nettles”. For years I scratched until I would swell and bleed. My doctor thought it was psoriatic arthritis and I do not know when they do the ANA if they only check for what your doctor has told them….but my diagnosis is SLE and Hashimoto’s but I’m sure Sorjgens (sp?), I’ve had Thygeson’s, Graves about 30 years ago but trying to get tested was a nightmare then….I believe the doctors all thought I was doctor shopping and I usually did not get nice treatment, I might add. I got a lot of rude comments!
Wishing you all the best🙏🏼❣️