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Throat issues and FMF

Kaylea-Leanne
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My son was diagnosed in 2007 with FMF. He has since been on colchicine liquid since he wouldn't swallow the tablets. He is now 6 years old. Has not really had any fevers since other than some strep throats/ear infections. I was wondering if anyone else has had a child with chronic tonsils/strep throats with FMF? I know throat issues are with PFAPA but hard to find info on FMF and throat. We are deciding if we should have his tonsils and adenoids out. He has been with frequent swollen tonsils/
bad breath/strep like issues. Any help would be appreciated. K.L.

Explore topics in this discussion:

PFAPA Pain Colchicine

2 replies

FMFkid

hi, my name is Alexis. I have FMF and im 12 yrs old. I have been on colchicine for four years. I use to get very high fevers but since i've been on colchicine it stopped. But i do get realllyyyy bad stomach pain and joint pain.
I would Loveee to chat with u.
if you want to u can email me at xoalexis8@aol.com
thanks and i hope to hear from you soon!!! :)

MJame21

Hi Kaylea,

I'm 27 yo and have the genetic mutation for FMF. I'm colchicine resistant and am in the rilonacept trial at the NIH. I have severe issues w/ my throat so yes - you have someone in the same boat.

When I had my first attack in January '08 I went to the Emergency Room and the ER Doc told me it was the worst looking throat he'd ever seen and was shocked the culture came back negative for strep. This was repeated about 5 times before I was finally diagnosed.

Presently, when I'm having an attack my tonsils and other lymph nodes become incredibly inflamed - sometimes so much so that if I turn my head to one side too quickly I won't be able to breathe b/c the nodes are so large.

I've toyed with the idea of having them removed but haven't given it any real thought.

Best,
Maris

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