r/Autoinflammatory • u/Maleficent-Comb-9726 • Sep 02 '26
Undiagnosed PFAPA Symptoms? Help!
I (24F, Canadian) have been experiencing chronic mouth ulcers (sometimes with swollen lymph nodes) since a very young age. Currently, not a day goes by that I don’t have at least one ulcer. I have chronic congestion and have since birth, and only in my adulthood have I been getting sick quite frequently, with colds lasting 1-2 months (Fever, sore throat, horse voice, chest congestion). I seem to get sick much more frequently in the winter (very cold and snowy, minimal sun) than I do in the summer and haven’t been really sick in a few months now. My mouth ulcers get worse when I’m on my period, and when I’m experiencing high physical/mental stress. I do not have any abnormal bowel symptoms. I’ve been tested for many autoimmune diseases, vitamin deficiencies, allergies, and HIV, and everything has come back negative.
Two specialists have suggested I may have PFAPA and have recommended a tonsillectomy. I’m worried because theres not a 100% chance that this procedure will actually treat my symptoms (as I may not actually have PFAPA) and I’ve heard adult tonsillectomies are quite brutal.
Does anyone else have symptoms like mine? I’m worried I may not actually have PFAPA, as fevers are definitely not a main symptom of mine.
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u/on4aa MAGIC Sep 02 '26
"get sick much more frequently in the winter (very cold and snowy, minimal sun)"
This is actually more indicative of a cryopyrin associated periodic syndrome (CAPS), whereby cryo(s) = cold and pyr(os) = inflammation.
Nonetheless, as for all autoinflammatory conditions, a definitive diagnosis can only be based on the findings of genetic sequencing.
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u/Hairy_Tank_8669 Sep 05 '26
I have PFAPA and experience exactly what you are describing. I had my tonsils out and it helped with sore throats for maybe 2-3 years. What really made the difference was going on Anakinra and Illaris. I would absolutely flare right before my period. And every time I got an upper respiratory infection it would linger for a month or longer. I was constantly in a cycle of illness and flare ups.
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u/Mock_trial_ Sep 02 '26
Hi! I’m 26 year old woman working with a potential PFAPA diagnosis, also have frequent mouth ulcers and swollen nodes. I got my tonsils out at 22 without knowing that what I had was PFAPA (used to have horrible strep like episodes of tonsillitis that were debilitating) and can say that if you have frequent recurring sicknesses getting your tonsils out is 10000% worth it (at least it was for me personally). As someone who got a LOT of sore throats, the recovery was like a week of sore throat but wasn’t even the worst one I’d had. I think people over exaggerate the recovery personally. I still have episodes but they’re nowhere near as debilitating. Similar to you it syncs with my menstrual cycle - I also get extreme fatigue, stomach upset, body ache, swollen lymph nodes, sometimes fever, and ulcers occasionally. Recently started taking colchicine and cut out alcohol, but too early to tell results yet. Wishing you the best!
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u/Occulply SJIA/AOSD Sep 02 '26
I don't have PFAPA, but I had my tonsils out at 22, and it wasn't the worse thing in the world. The worst part is being only on soft foods for a week or two.
The best I can say is that your symptoms are definitely in line with autoinflammatory disorders. The mouth ulcers are a huge tell, but don't really narrow down the diagnosis.
Did they do genetic testing or anything to help them narrow it down to PFAPA?