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A MyLupusTeam Member asked a question 💭
Phoenix, AZ

I've been on Plaquenil for over 16 yrs It has been a big help to me. Yet lately the past 2 yrs I have been having severe muscle pain in my thighs,upper arms and neck, yet my CRP etc always comes back normal. I recently saw a vein specialist and told her wearing the stockings makes my thighs hurt so bad I can barely walk but as soon as I remove them I'm better. She told me that I need to speak to my Rheumatologist because it wasn't my veins etc. Then she asked me how long I have been on my… read more

July 11
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MyLupusTeam

Yes, long-term use of Plaquenil can, in rare cases, lead to toxicity — and your instinct to research this is completely valid. Plaquenil-induced toxic myopathy is a real, recognized condition, and muscle pain in the thighs, upper arms, and neck are classic symptoms. The fact that your inflammation markers are coming back Show Full Answer

Yes, long-term use of Plaquenil can, in rare cases, lead to toxicity — and your instinct to research this is completely valid. Plaquenil-induced toxic myopathy is a real, recognized condition, and muscle pain in the thighs, upper arms, and neck are classic symptoms. The fact that your inflammation markers are coming back normal actually aligns with this, since toxic myopathy isn't always reflected in standard inflammation tests.

Please don't wait until next month — call your rheumatologist now. Here's why this is urgent:

- Toxic myopathy can worsen the longer the medication continues
- Early intervention can prevent further muscle damage
- Your rheumatologist may want to order specific tests, like a muscle enzyme test (CK levels) or a muscle biopsy, to confirm
- If toxicity is confirmed, stopping or adjusting Plaquenil needs to be done carefully and under medical supervision — never cold turkey on your own

It's also worth noting that hydroxychloroquine typically stays in your system for around three months after stopping, so your doctor needs to guide this process carefully.

The vein specialist gave you a really important heads-up. Trust that instinct, and make that call tomorrow morning. This is exactly the kind of thing that deserves a prompt conversation, not a waiting room.

July 11

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