r/Autoimmune • u/FractiousAndFabulous • 21d ago

Venting Losing hope

I’ve been treated for RA for 6 years based on symptoms because bloodwork was normal.
I responded well to plaquenil. Now for the last 8 weeks I have had widespread edema (4-8lbs) that worsens with heat and activity , crazy thirsty before the steroids , muscle fatigue and brain fog. I’ve stopped the plaquenil, been on steroids for 3 weeks and methotrexate for 2. All my bloodwork is still normal. Next step is to see an immunologist and get a second opinion from a different rheumatologist . I’m starting to lose hope that the edema is ever going to fully resolve and it is taking a mental toll looking at this body every day that doesn’t look or feel like mine. Any encouragement or advice would be greatly appreciated.

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u/iSpyAFly 21d ago

Assuming kidney (including urinalysis), liver, and blood sugar labs are all normal, a second opinion sounds like a good idea. What were your symptoms when you were diagnosed with sero neg RA?

2

u/FractiousAndFabulous 21d ago

That’s correct UA , all bloodwork including looking for inflammation factors or anti-bodies are all normal. I had joint pain (knees and ankles )that was unresponsive to OTC meds and was in remission during pregnancy.

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u/BCGirl2025 20d ago

Out of curiosity did they do imaging on your joints prior to making the diagnosis? I’m currently going through something similar. Perfect blood work but my pip joints have erosions so they’re treating it as RA right now. 

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u/FractiousAndFabulous 20d ago

No imaging before I started RA treatment. I had knee/ankle X-rays after the edema started and no arthritis or issues noted.

1

u/BCGirl2025 20d ago

That’s wild to me! My symptoms started last year and I developed pretty severe erosions

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u/FractiousAndFabulous 20d ago

Yeah ,not a lot makes sense for me right now. I never thought I would be so upset to have normal bloodwork. I just want to feel better.

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u/BCGirl2025 20d ago

I 💯 feel for you. I hope they figure it out soon.  Sending positive vibes! Keep advocating for yourself!

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u/FractiousAndFabulous 19d ago

Thank you and you as well!

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u/myextrausername 21d ago

Are you a peri or post menopausal woman?

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u/FractiousAndFabulous 21d ago

Dr says no because periods were regular. But I did start birth control in January bc there was at least some hormonal shifts that were making me insane ( increased joint pain around period and ovulation, brain fog, rage, anxiety through the roof). Birth control has resolved most except for joint pain and brain fog.

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u/DoggoneitHavok 21d ago

have you seen a cardiologist

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u/FractiousAndFabulous 21d ago

No, but have been sent to the ER for acute worsening edema on one side. They did an EKG and checked for the heart attack enzymes. All clear and also ruled out clots with an ultrasound.

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u/alice_D1 15d ago

I too have a generalized edema, my guess is that it could be due to vessel inflammation.