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Old 09-28-2011, 07:43 AM   #2
Join Date: Nov 2008
Location: Reedsville, WI USA
Posts: 2
Carmensita31 HB User
Re: PFAPA (Periodic Fever) help!

Originally Posted by Jorgs 7 View Post
Hey everyone. Im 19 years old just about to turn 20 and Ive been diagnosed with PFAPA (Periodic fever, aphthous stomatitis, pharyngitis and adenitis). This has been going on since about 7th grade, when I was 12. We didnt have any idea until a doctor at our Urgent care office brought up the idea. Ive been getting prescribed Prednisone but I really hate the idea of taking that every 6 weeks. I notice my sickness appears more often once Im under heavy loads, stress, 50+ hours at work, ect. Ive called my local infectious disease center and they said they would get back to me but probably cant do much about it since its a genetic/hereditary syndrome.

Is there any other drug out there that people know of that works on a consistant basis? I know long doses of prednisone can result in catarax, bone issues, athritis, and much much more.

Im getting tired of being sick so often and Ive been told I should out grow this eventually, but Im getting my *** kicked all the time by this. Who out there can help!? Also, are there any specialist out there for this?

I can understand your frustration. My 15 1/2 yr old son has been struggling with this since he was 8. He had his tonsils and adenoids taken out 2 yrs ago and was good for a length of time and now has started up again slowly this past spring. I recently found out that there may be genetic counseling(which means they may have identified the gene that causes this and can possibly help your and my son's cause). Right now I would try to learn to curb your life style so you don't get worn down first and then talk to your primary care doctor about this genetic counseling. If you don't find luck with your PCP(primary care physician), go find a new one. There are plenty out there. Make suggestions to them about which direction you want your care to go.
No drug is going to be a miracle drug. You and my son need to learn to" live within your means" and that means taking care of yourself first. I know it is hard to slow down at your age but life is long, enjoy it.

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