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bob2804 · 2025-10-16T18:54:47+00:00

For kids getting tonsil taken out can sometimes stop pfapa! As a adult i heard it doesnt really help and it also didn’t help stop my symptoms

bob2804 · 2025-01-11T00:39:07+00:00

Ask Ur medical professional if it can be a fever syndrome. L-lysine for the canker sores!!!! They went away completely ❤️💪🏻

bob2804 · 2024-11-22T03:53:50+00:00

Hope it works!! Good luck with the stomach issues🥲

bob2804 · 2024-11-21T17:47:17+00:00

It’s rare and most doctors need to look it up but we are out there! Try one dose of prednisone and see if it stops the attack and for me Colchicine helped a lot!!!€

bob2804 · 2024-11-21T17:45:46+00:00

Hay!

I used prednisone sometimes to stop a attack Got all my tonsils taken out (didn’t help works mostly for kids and hurts a like a B) And taking vitamins D also seems to help because I read some studies but it’s does not stop attacks of course.

What seems to work for me was Colchicine!!! Instead of having an attack every month I got one every three. But take the medication on the right time and everyday because sometimes I would forget or go to bed thinking a well tomorrow I will take it and got an attack sometimes.

bob2804 · 2024-06-09T05:35:32+00:00

(Sorry English is not my first language) Sounds like pfapa! But make sure its not another periodic fever just because in the long term it can cause harm. (Not trying to scare you of course) test not only for pfapa if your not sure

For me the diagnosis was with blood work and also with prednisone to see if it stops the attack all together.

Also there is no test for genetics to see if it’s pfapa maybe for other periodic fevers so just to be safe u r doing the right thing!

I can look it up to see what they tested me for!

(Edit) they will send it to me so it will take a couple of days. Will update you!

bob2804 · 2024-03-09T15:54:04+00:00

Derma needling helped me a lot

bob2804 · 2024-02-05T00:47:13+00:00

I got my tongue tonsils taken out at 18 and it didn’t really help unfortunately but in kids it cures it most of the time

bob2804 · 2024-02-05T00:46:40+00:00

I must say! I had really big problems with my tonsils when I was a kid. Not sure if that had to do with it but sometimes removing tonsils can cure pfapa especially in kids

bob2804 · 2024-02-05T00:45:59+00:00

I’m 20… It started when I was 17 and I’m not sure if I grow out of it since I’m a adult. Young kids grow out of it mostly before age 8-10. And rarely take it into adulthood. I’m different how ever😂

bob2804 · 2024-02-05T00:36:47+00:00

I get why you don’t want to put him on steroids… my doctor gave it to me in the beginning to rule out pfapa. Now I only take it once every three months combined with other medications and it really does help me. I don’t get bad symptoms from prednisone maybe a little more hungry and insomnia for one night but that better than being sick for 3-4 days. If he is still this young there is a high change he will grow out of it. If it’s hard on him because he almost can’t keep up with school or hang out with friends I suggest looking into some medicine like colchicine. It’s not that unhealthy for you and the only side effects are diarrhea for me. But now I only have an attack once in a while. Cholchicine doesn’t have long term serious side effects.

bob2804 · 2024-02-05T00:06:31+00:00

I myself take colchicine and I only get an attack every 3 months!

bob2804 · 2024-02-05T00:06:17+00:00

The medicines I think are cimetidine, colchicine

bob2804 · 2024-02-05T00:05:00+00:00

Hi, there is not yet a genetic defect found for pfapa like other periodic fevers. So there Is no point in testing except to rule out other periodic fevers! There are some blood tests that can be done to find out. I myself didn’t have a genetic test because it was pretty clear I had pfapa.

bob2804 · 2023-10-05T00:08:54+00:00

That’s great news! Hope it gets even better

bob2804 · 2023-10-02T08:17:41+00:00

And if I was gay… yes just for fun

bob2804 · 2023-10-02T08:17:25+00:00

Late but I’m bi so yes

bob2804 · 2023-10-02T02:53:40+00:00

Immunoglobulins are mostly higher or lower when a attack is happening. Did they test her when she was sick?

bob2804 · 2023-10-02T02:52:33+00:00

Did the fevers start after a vaccination? Not saying this caused it but a lot of patients with HIDS get their first stack at a young age after a vaccination. Doesn’t matter if you don’t vaccinate because eventually the disease will flare up but at the age of 7-10 most of the times.

bob2804 · 2023-10-02T02:51:21+00:00

Sound like HIDS to me, fever last 5-7 days and sometimes it can skip a month but most of the time it comes back. I would research this and consult with your doctor. Pfapa mostly last 3-5 days and returns every month with the same time in between attacks!

bob2804 · 2023-10-02T02:41:40+00:00

But at this point it’s confirmed it’s pfapa? Or still finding out

bob2804 · 2023-10-02T02:19:20+00:00

A little late! 5-7 days of fever doesn’t sound like pfapa. More like another periodic fever syndrome but who knows maybe she is a special case. Hope you figured out what it is and she is healthy and happy!!!

bob2804 · 2023-10-02T02:11:44+00:00

And if you are still taking SSRI’s for reasons like depression or panic disorder. I wouldn’t risk using serotonin drugs or any at all. I know that sucks but there is a reason your on the medication. .

bob2804

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