Discussions that mention cimetidine

Rare Disorders board


Well just when I thought the fevers couldn't get any worse! I think the prednislone has made it 100 times worse but they started my son on cimetidine and they seem to be a little better. The last cycle only lasted 5 days...that's a lot better than 17! HOWEVER he has developed arthritis! The Dr. said it may just be that his previous 2 fevers lasted so long that infection has set in and if so then that is an acute case of arthritis. If it lasts more than 6 weeks then we know it is juvenile rheum. arthritis. I had NO IDEA of all the stuff your immune system is in charge of! We go back on the 29th...wish us luck!
For those who seek more info on the anti acid, the spelling is cimetidine....

Although your child may have found relief, I suspect it is either a coincidence or the cimetidine is simply treating the symptoms.

I assume your child has been treated with anti biotics? If so, what kind of reactions did she have?
We had tried the Cimetidine for my son, but it was unsuccessful. Fever is not his primary symptom, so we are still not convinced it is PFAPA, but our rheum thought it was worth a try. He said that studies showed it stopped flares for PFAPA patients in almost 1/2 the cases tested. Tonsillectomy is the other treatment that has proven very successful in many PFAPA cases. Unfortunately, that only provided us a month of relief. Still hunting for a diagnosis/treatment...

No matter what the reason for your daughters improvement, I'm happy that she is doing better.
Boy - I didn't spell cimetidine wrong once, but 4 times! Anyhow, my daughter was put on antibiotics every month for about 6 months or so, until we said no more. Her doctor was pursuing bladder or urinary tract infections because of her high fevers. Anitbiotics did nothing. As soon as we saw infectious disease he said PFAPA, but was never truly convinced of that because she was too young to tell us about any other symptoms and she never had mouth sores. She has chronic mild anemia and has ever since they started drawing blood. Does that mean anything to anyone?
We were told that if the cimetidine worked, then the diagnosis of PFAPA would be confirmed. I think if something more was going on, the cimetidine wouldn't mask it and the fevers wouldn't have gone away. As for the mild anemia, I'm not sure. What did her doc say about that?
[QUOTE=walli6;3880008]Boy - I didn't spell cimetidine wrong once, but 4 times!Well, you're doing better than many of us...I ALWAYS spell solely "soley" and that's an ordinary word, not technical, :D. I only pointed it out to make it easier to "find".

[QUOTE]Anyhow, my daughter was put on antibiotics every month for about 6 months or so, until we said no more. Her doctor was pursuing bladder or urinary tract infections because of her high fevers. Anitbiotics did nothing. As soon as we saw infectious disease he said PFAPA, but was never truly convinced of that because she was too young to tell us about any other symptoms and she never had mouth sores. She has chronic mild anemia and has ever since they started drawing blood. Does that mean anything to anyone?

Yes! Antibiotic treatment for lyme and its coinfections is dependent on what "bug" or "bugs" may be causing the infection...so the treatment and the length of treatment depends on which bug or how many different kinds of bugs are causing the symptoms...from what I've read, one of the strains cycles every 3-4 weeks which may account for the frequency of some of the fevers (that is one reason the timing and duration of the antibiotic treatment is critical). Children who have fevers that don't cycle in this way, may have been infected more than once over a period of time which would throw off the regularity of the recurring fevers.

Many women have chronic yeast, bladder, and urinary tract infections...chronic conditions of this nature go hand in hand with Lyme...I have read that some doctors think that 1/2 of their patients with these conditions have lyme...your ID doc may have been on to something here...but again, I think it is Lyme related.

Some posters on the Lyme board have said that Infectious Disease doctors are the worst when it comes to diagnosing/treating lyme...I'm paraphrasing here, but I think you know what I mean.

It may very well not be Lyme....but I personally wouldn't rule it out. Undiagnosed Lyme can lead to many chronic conditions...arthritis (clicking and popping joints), bowel problems (IBS, celiac), allergies, psychiatric problems (bi-polar is a common diagnosis), cognition problems, sleep disturbances, and possilbly death. It's just too serious a condition to ignore/deny.
Always more blood draws - cronic anemia with the fevers was raising a celiac disease possibility, but the fevers are gone (for now & hopefully forever). We have stopped pursuing anything unless her fevers return. She had fevers for about 11 months before they disappeared as mysteriously as they started - unless it was the cimetidine??
[QUOTE=walli6;3881189]...She had fevers for about 11 months before they disappeared as mysteriously as they started - unless it was the cimetidine??

I doubt it was the cimetidine...symptoms of many conditions ebb and flow depending on a number of factors.

People who have had lyme for a period of time can present with low grade fevers that come and go, but as time goes on other symptoms may arise...especially if the immune system is challenged (by steroids, stress, injury, other illnesses).

If you haven't already done so, it may be helpful to document the symptoms over time...date, time, description, duration, environmental factors, etc. You may begin to see a pattern.
First I have to say i have been reading these message boards for 2 years and have never replied to anything. I am so glad to know that there are other parents out there going through this horrible thing known as pfapa. My daughter has been dealing with this basically since she was born. She had a fever at two weeks old and the doctors thought I was crazy. She has been getting them pretty consistently ever since. She wasn't officially diagnosed until about 5 months ago. She has taken many different meds. Colchicine, methotrexate along with folic acid, prednisone, and is now on her first week of cimetidine. She just had an episode last week. We are not sure if the cimetidine is gonna work. We are trying to convince her specialist to get her tonsils out but they really won't consider it. She is not quite 3 yet so I don't know if they just think she is to young or they are just trying every med first. Anyways it is nice to have somewhere to go to get info on this crazy syndrome and know that you are not going through this alone.
I am new to this board. My son was diagnosed last year with pfapa at the age of 9. He has been enduring pfapa for most of is childhood (at least since he was 3) His symptoms are high fever, nausea always, horrible canker sores (sometimes the size of my thumb print), swollen glands and white patches on his throat. He has not been on Prednisone or even Cimetidine as of yet. We have been doing supportive treatment like miracle mouthwash for the sores etc. His doctors are cautious to try the steroids. Due to frequent absences in school we are faced with the threatening notes questioning our commitment to his education. He remains one of the top students in his class. Any suggestions on how to address the school? We are very desperate to have this illness behind us and were told he "should" outgrow it soon. We are searching once again for a better treatment plan. Thank you for listening and sharing your stories. It feels really great to know I am not alone in this.
The prednisone really works but it makes the episodes come closer together. My daughters fevers only last not even a day now but she is getting them about every other week. I guess it is a double edged sword. I am not sure if the cimetidine is doing anything. She has only been on it for 3 weeks and has been sick three times. Won't know if they are going to take her off of it until we see the specialist in May. I can not get them to take her tonsils out. I mention it every time but they just seem to keep trying different meds.