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A MyPrurigoTeam Member asked a question 💭
Berea, OH

I have been sick for 2 years besides the rash. Blurry vision, swelling, swollen glands. Dermatologist says not a result of pn. Now I am down to being tested for lupus if I can get to the hospital. So tired! Back to regular doctor!

October 26, 2023
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Answer Summary

Members connected over the original poster's frustration about experiencing systemic symptoms beyond their skin rash, including joint pain,... Read more

Members connected over the original poster's frustration about experiencing systemic symptoms beyond their skin rash, including joint pain, swelling, and fatigue, with many sharing similar struggles of feeling dismissed by dermatologists who insist these issues are unrelated to their condition. Several members described their own complex autoimmune journeys, with one sharing how nerve issues in their neck caused severe itching and skin picking on their arms, finding relief through lidocaine injections and Saphnelo infusions for their lupus, while another emphasized that people with autoimmune conditions are wired differently and often cycle through various symptoms as the body remains constantly run down. A recurring theme was the lack of understanding among many doctors, with members encouraging each other to seek second opinions, advocate for thorough testing, and lean on the community's lived experience as the most valuable source of practical guidance.

A MyPrurigoTeam Member

Most Docs and Derms are clueless , they are all blind men describing parts of the elephant, people with it helping people with it has been the best salvo for me with tips to manage it, its for life.

October 29, 2023
A MyPrurigoTeam Member

I swell a lot stomach and face, I have a lymphoma on my upper arm this is second it’s very big and painful, I have a tear in my knees with leaking fluid. I’ve had PN since I was born had the strangest of illnesses. It is an autoimmune condition so at this stage we can literally get anything our body wired differently to other people. I find if one thing stops it’s replaced with something else so body always run down and struggling. I wish you well

October 27, 2023
A MyPrurigoTeam Member

Rheumatoid arthritis and osteoarthritis cause joint pain, swelling and hot to the touch joints. I have both, unfortunately. I don’t know anything about lupus, sorry.

November 5, 2023
A MyPrurigoTeam Member

More questions. Is the lupus causing the rash? Does the doctor know? I am being tested tomorrow for lupus because of the moving pains. My dermatologist says the pn doesn't cause joint pain but I don't think they know. Your experience?

October 29, 2023
A MyPrurigoTeam Member

Good grief! Butterfly rash is lupus. I am on hydroxychloroquine, we will see. Is the nerve problem due to the rash? God bless you!

October 29, 2023

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