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Undiagnosed and frustrated: RA? Lupus?

Autoimmune Diseases | Last Active: Feb 11, 2021 | Replies (19)

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@brandeervatx

Hi @ske22!

I just came across this thread and so much of your post resonated with me. I'm 36, a former athlete who is in otherwise good health, but having been having similar AI symptoms the last 14 months (so still early in the "journey") and had my first rheum appointment in August after a positive ANA (1:640, atypical/speckled) in March and elevated CRP with every blood test since. Today I got a call that my Eos is also elevated and I'll be going back in to retest it in a few weeks' time. I have no diagnosis.

Negative for RF and anti-CCP. Getting crazy night sweats from time to time (we have to keep the room at 65 and have the ceiling fan on), and over the last 6 months increasingly severe menses with shortened time between cycles--had to be tested for premature perimenopause just to time it out. My care team is part of a large research and teaching hospital, but still no dice. I've seen a rheumatologist, endocrinologist, PCP, and will be getting a second opinion from a rheumatologist out of network next month.

I was struck by your description of the rash; I have a very similar issue! It started on my elbow and would slowly migrate towards my wrist, and then started to appear on the topside of my forearm. Tiny, itchy bumps that were either light red or skin colored. Worse in the heat/sweaty conditions. Left behind an oddly textured, scar-like spot where they clustered. Docs thought it was eczema, but it didn't respond to eczema drugs.

Currently on 400mg of plaquenil daily, which seems to be slowly helping the chronic swelling in my hands/feet, but still suffer from fatigue, exhaustion, and insomnia. If you get any updates, would love to know!

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Replies to "Hi @ske22! I just came across this thread and so much of your post resonated with..."

Hello @brandeervatx, Welcome to Mayo Clinic Connect. I'm happy to see you have connected with @ske22 and hopefully can learn from each other. There is another discussion on Connect that you may find helpful since you mentioned that you suffer from fatigue, exhaustion and insomnia. Also, you might want to read through the discussion in my post above for @ske22 since your symptoms are similar. Here are the links to both discussions.

Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Constant Fatigue, 20 year old female
-- https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/

Hopefully your out of network appointment with another rheumatologist will provide some answers. Can you share an update after your appointment?

Has anyone noticed any side effects from Plaquenil? It’s been offered to me but after reading side effects I’m scare to take but it would seem has been helpful for many. I am going through the gambit of trying to figure things out and having little luck getting an appt with a Rhuematologist locally. First appt available is in March. I too have patches on my elbows, had rash on face across my nose, joints achy, diagnosed burning mouth syndrome and central sensitization (diagnosed at Mayo). I have constant sore throat and at times mouth sores. Have had candida in my mouth at times and on my lip. Positive ANA.

Thanks for your reply! I guess I missed it a while back, but I’d love to see pics of your rash if you have any? I’ll post a few of mine too for comparison.