This is my first post on this forum.
I want to ask if there are adults among us with PFAPA diagnosed?
I've seen two posts regarding that from Gaeltacht and Kaamodt (posted some years ago). Gaeltacht had her tonsillectomy scheduled while Kaamodt was 6 weeks after.
Since I have PFAPA myself (35 years old), I am very curious if this surgery helped.
Kaamodt, Gaeltacht, if you hopefully get back to this forum, please drop a line about the effect. Did it work for long?
Are there any others adults after tonsillectomy? Please write some information how it helped with your (hopefully former) PFAPA.
I just found your post and I hope you are still using this site.
I have PFAPA for about 11 years now since I was 18. I was diagnosed when I was 26 when I was finally referred to an immunologist. He checked my tonsil and told me I had none, at some stage my body must have had an auto tonsillectomy, removed the tonsil itself. Despite the fact I had no tonsil I still have fevers. However I find that the severity has lessen over the years, reduced stress, get lots of sleep, staying warm, no spicy food, limited alcohol has helped; the best is to exercise I find.
Hope to hear more of your story, hope this helps.
I decided not to go ahead with the tonsillectomy - instead via research on the internet I found that a dose of prednisone right at the start of an episode completely eliminated the symptoms! My doctor was receptive and gave me a standing prescription so I could treat myself.
About 12 months ago the episodes began to decrease in frequency and I have not had a recurrence in about 6 months now.
When I was in the throes of the illness I did notice that I did not get ANY other illnesses at all - no colds, or flu or anything. Also, I noticed that if I became stressed or exhausted I was more likely to have a flare up.
It seems that maybe whatever I had has burned itself out - though there is new research coming out now on the causes of the childhood version which suggests it's an autoimmune diseases, so I don't know how that "burns out".