Discussions that mention cimetidine

Rare Disorders board

Hi, I'm in the Cleveland, OH area. My son was officially diagnosed with PFAPA at 11 months (he's 20 months now). He had been suffering with the fevers since he was 3 months old. I started tracking them on a calendar at 7 months and my (awesome) pediatrician kept great records too. When we finally got to see a specialist (first infectious disease and then rheumatoid), they were ready to take us seriously because of those records.

Some of my son's symptoms (sore throat, mouth sores, terrible breath, skin texture changes) didn't show up until later. Did anyone else experience this?

The doctors tried the prednisone, but it made the fevers come more frequently. He is now on cimetidine (tagamet) and is doing better. It's not cured, though. He still gets a fever, but it is much lower (101 tops, instead of 105-106),it doesn't even last the usual 3 days, and they come 6-8 weeks apart instead of every 4 weeks. The doctors believe the tonsilectomy will take care of it, but my son is really too young for one. I guess they are complicated for toddlers. I was also told he may grow out of it.

PFAPA is pretty scary, especially with an infant! Maybe we all need a support group...
Hello to all. We went to the rheumatologist today for the 4th time in year and were diagnosed with PFAPA. Our daughter is 2 and has had fevers basically since she was 6 months old. She has episodes every 2 to 3 weeks and runs fever for 4 or 5 days. Her fever has never been higher than 103. To make matters more complicated she was diagnosed with chronic benign neutrapenia when she was 8 months old. Her fevers continued and we begin looking for answers over a year ago. We had a complete “work-up” by the immunologist last fall and they came up with nothing. We also saw a cardiologist for Kawaski disease and that was negative and then begin with the rheumatologist. Over the past year her health continued to get worse. We have had her tested for everything under the sun including cystic fibrosis. This past May they did a bone marrow aspiration because of her neutrapenia and fevers and changed her diagnoses to autoimmune neutrapenia. We have been treating her with twice a week injections of neupagen to stimulate her bone marrow. It has worked wonders for her immune system but she still continued to have the fevers. So…..that’s when the decided the fever and the neutrapenia were not related and we began looking for other causes of the fever and that is how we got our PFAPA diagnoses today.
We have been very frustrated with all of this and it is so hard to watch your baby go through all of this. Our doctor is recommending taking Cimetidine daily and having her tonsils and adenoids removed. Our daughter has had ear tubes put in 3 times and we are trying to make a decision on doing them again for the 4th time. I was wondering if anyone else is using this medication? And have they had the tonsils and adenoids removed?

Can’t wait to hear from someone!!!
to katiebug05 Or anyone else who can answer-

How long did it take for Cimetidine to work? Did you see the fevers go away immediately or did it take a few hours/days/months? I am going to an ENT, but what do I saw to convince the ENT that he has this syndrome? The doctors think it is always a virus. All lab results came back normal. They can't find anything. I am creating a file of proof to take to the doctors...including calendar of dates and information of PFAPA syndrome. Any other information would be great.