Treatment of Patients with PFAPA

[@amandabrownfield7363]

My daughter also has PFAPA and it took us so long to get it diagnosed. we just kept hearing "its just a virus" When i switched to my childhood dr, he noticed the frequency of her fevers getting up to 105 degrees, even after tonsils and adenoids came out... and we determined she had PFAPA and urinary reflux. every time she would get a UTI, she would get a fever, then the following week, she would get another fever and couldnt walk bc of joint pain and side pain, mouth sores, and sadly, we were not able to use steroids bc they were afraid it would damage her kidneys more. she is now 8 and the episodes are not as frequent now but drs telling me could be cancer, could be lupus, etc had me going crazy.

[@SACBENT05]

I would strongly recommend taking your daughter to an academic medical center having departments in pediatrics. Such as the University of California-Davis or Texas children’s hospital in Houston Texas. There are other similar academic centers across the country that should be equivalent. Both that I mentioned have pediatric physicians that specialize in immunology. Our boy/girl twins came down with PFAPA at the age of seven and eight. Our Boy had a tonsillectomy after having six episodes every 30 days during 2017. Since then he has had 2 episodes. During 2018, at the age of 8, our girl started having fevers but her’s stopped after 4 flares. Since then she has had infrequent periods of periodic fever-less flares. Strongly recommend your daughter see a pediatric immunologist at an academic medical center. Good luck.

[@Justin-ww8xk]

I started having symptoms when I was 33 with no explanation. Fever, night sweats, body/joint aches, sore throat, white patches on throat & swollen lymph nodes in my neck. Was just diagnosed at age 35 with PFAPA. So mine was adult onset which is really rare. No doubt in my mind that the Covid shot I was forced to take made it show its ugly face.

[@MsSprinkles1120]

My daughter has this and still experiences it but it’s less frequent now that she is a preteen. Dealing with an episode right now.

[@PoeticAmmunition.]

I just discovered by my own research that my son has this. Can I ask does ur daughter have history of anxiety or anything similar? I feel like there is a link with my son

[@Strutter1998]

How long does it take for colchicine to take effect if it does? We've taken it for our 15 month boy for one month but had 2 episodes during medication. One at start and one just now.

[@maddalenascocco4648]

hi, i am an italian affected by pfapa. I got sick every 20th of the month. I solved it thanks to a doctor who told me to take Bentelan (cortisone) tablets every time I get sick. I haven't been sick for 9 months. talk to your doctor

[@Strutter1998]

@@maddalenascocco4648 thank you for your answer. We tried cortisone and it removed the symptoms very rapidly, but we were not pleased with the side effects of cortisone. Our doctor is not recommending cortisone but I read that it is used widely. Our son has taken 2 times 250 mikrogram per day for roughly 3 months now. 4 weeks since last flare. Usually 3 weeks between. Hoping for the best!

[@Strutter1998]

An update. Our boy had a tonsillectomy 7 weeks ago. Not a flare since!

[@thelamandapanda]

@@Strutter1998 that's good news! Our 2 year old just started on the steroid, but it makes his fevers occur more frequently. So we are likely going to get him a tonsillectomy also

[@enricognt2538]

@@maddalenascocco4648 ciao! Sono nella tua stessa condizione e sono disperato, posso contattarti? Magari via mail per confrontare i miei sintomi con quelli che avevi tu? Perché non sono sicuro sia pfapa o tonsillite. Dicono la pfapa colpisca i bambini, ma io ho 22 anni 😂 eppure molti sintomi coincidono

[@thefiresupplier6361]

My problem with PFAPA is so bad that when I commented about it, KZbin propagated it by sensoring my freedom of press. All I can say now is thank you Google, thank you KZbin, & a special thanks to that sick man Joe Biden:) Those were sarcasm, I know that I'm on a list now. Lol

[@amberbo7014]

Please tell me more I think my son has this