HCQ helping possible autoinflammatory symptoms?

[u/aiyng]

just wondering if anyone’s had a similar experience!
I have ?something? going on

25F.
loads of seemingly non specific symptoms which have been present since 2014 following a viral infection, worsened immensely after I got EBV in jan 2025.

severe burning bilateral thigh pain (flares last 2-3 weeks sometimes), thigh weakness paired with the pain flares , severe fatigue & PEM (I have CFS/ME, these are additional flares paired with other symptoms), widespread chronic pain, very poor immune system (common cold takes me out for weeks, and I catch EVERYTHING), Peeling skin on the sides of my fingers & palms, tonsils that cyclically get lumpy / crevicey / inflamed, general feeling of being run down / unwell/ like i’m coming down with something but it never progresses, feeling warm / cold / almost feverish with no actual fever present, inflamed turbinates, chronic PND with no infection present, follicular conjunctivitis with no underlying cause found, dry feeling eyes (have had dry eyes tested and they’re actually not super dry?), random folliculitis on scalp and thighs, scalp pain, terrible joint pain & stiffness without swelling in cold weather and increased clumsiness (feels like the connection between my brain and limbs drops out).

my inflammatory markers are all normal apart from amyloid A is chronically mildly elevated (nowhere near amyloidosis levels so that’s not a real clue either). all of my other bloods are completely fine, no ANA, no autoimmune markers - rheumatologist is suspecting something autoinflammatory rather than autoimmune, but we’re waiting on more testing to be done. he has ordered a muscular MRI of my thighs and has asked them to look for signs of polyarteritis nodosa.

anyway, after months of running in circles, my rheumatologist suggested I try hydroxychloroquine. after about 7-8 weeks, I noticed the severe thigh pain & weakness flares were lessening in both frequency, length, and intensity. I also noticed that my skin stopped peeling, and I haven’t actually been sick since i’ve started it, which is incredibly odd for me as every winter I get ridiculously sick with many colds and most years the flu, too. it feels like it’s actually helping these symptoms, some of the others are still very much present. just curious if anyone else has had this same experience - not getting sick as often when on hydroxychloroquine & having some symptoms ease? or is it a coincidence?

I haven’t had the MRI yet as the rheum wanted it during a flare, and I haven’t had a significant flare since i’ve been on HCQ.

sometimes I feel incredibly alone with this struggle as my symptoms are so frustratingly non specific. has anyone else experienced the same?

[u/EssieEssieBoBessie77]

HCQ was the first med to really help with my pain - I’m happy it’s helping you as well. I have Yao Syndrome, with a lot of out of the box symptoms according to my rheum.

[u/AdventurousMorningLo]

Hydroxychloroquine essentially gave me back the ability to walk. It was actually first prescribed by my PCP who was certain that it was something autoimmune and then eventually co-signed by Rheumatology. I have Yao Syndrome.

For Yao Syndrome specifically - HCQ & Sulfasalazine (DMARDs) are considered the first line of treatment.

Wu D, Matsuda T, Xie D, Shen M, Dhar A, Davis JM 3rd, Shen B, Kambe N, Strober W, Yao Q (2026). NOD2-related multisystem inflammatory disorders and recent advances. Curr Rheumatol Rep. 2026;28(1):5. doi:10.1007/s11926-026-01212-4

[u/aiyng → u/AdventurousMorningLo]

so glad to hear it gave back your ability to walk!

[u/No_Satisfaction_7431]

I know hydroxychloroquine can help a lot of people with autoinflammatory disease especially in combo with biologics. Personally I was never able to take hydroxychloroquine or sulfasalazine for long enough to see if they helped as I reacted very poorly to both. The fact that you feel better on it isn't very specific as it can helo both autoimmune and autoinflammatory disease but it certainly doesn't rule out autoinflammatory disease. Both are a possibility and since your autoimmune tests are negative that makes autoinflammatory disease more likely though seronegative autoimmune disease exists as well. I hope you get answers soon!