Antibiotics

I have had recalcitrant, refractory ITP for almost 20 years. I believe I have had almost every conceivable treatment including splenectomy, various steroids, NPlate, promacta, platelet infusions, danazol and azacan (which sent me to the hospital for 10 days including 4 in the ICU), rituzan, vidaza, cyclosporine, methatrezate, IVIG and probably some others I have forgotten. Most of resulted in only short term increases in my platelet counts above my base of 2000 to 6000.
In the last year there has been 4 times when my platelet counts have been above 300,000. In all cases I was on antibiotics for other reasons (hospital stay, sinus infection and tooth extraction, as well as now as a test). My platelets have never been above single digits once I went off the antibiotics.
I have tested negative for H pylori. My theory is that I might have some other chronic gut infection that impacts my ITP.
Has anyone else had such dramatic increases in platelet counts while on antibiotics. I look forward to your response.
If you wish to contact me directly, my Email is sandler@udel.edu

This is a conversation you need to have with your doctor. You need to show him or her the data that shows you were on antibiotics at the same time as when your counts went up. Ask about the possibility of this being a type of chronic infection? Ask about taking an antibiotic daily (specially if you say your counts are in the single digits with out them).

Thank you for your reply. I, of course, had done had done all the things you suggested before my post. After some discussion with my doctor (actually I have several since I have been declared a difficult case and been referred to several hematologists, including two who regularly speak at PDSA meetings),I was able to convince my local hematologist to try low dose antibiotics as a prophylactic treatment. We will see how that works out. The reason for my post was to determine whether others have had similar experiences. Once again thank you for your reply. S.

How have you managed things for 20 years being below 10,000 platelets? Did you have a lot of symptoms that were visible?

Can platelet counts drop when on antibiotics? My son has strep and it made me curious of what would happen if I needed antibiotics. I know they can drop when you're sick, but am not sure about the actual treatment. Are there any antibiotics that should be avoided?

Any drug or any antibiotic could possibly drop counts. I've had drops twice from Amoxicillin, but was able to take it years later with no problems. Some antibiotics can also raise counts, so you just never know. At any rate, either the illness or the antibiotic used to treat it could cause a drop so it's a risk either way. Just do what you normally would for an infection and try not to worry about it. What happens, happens.

Just an update. I convinced my hematologist to try a low level antibiotic (250 mg amoxicillin 2xday) to see what happens. The rationale is that I had a splenectomy almost 20 years ago and was going to an under developed country (Cuba) so the antibiotic was a prophylaxis against infection. Also, I had been on amoxi for about a month previously as a test. So what was the net result... platelet count of 12,000 6 weeks ago to 406,000 yesterday. My theory is that I may have a chronic infection in the gut, not h pylori for which I tested negative, that stimulates an immune response against my platelets, and an antibiotic brings that under control. When one considers the enormous number of bacterial types present in the gut, in the billions, and only h pylori is tested for, it may not be an unreasonable hypothesis. Also, recently some colleagues (I teach engineering at a university) have sent me articles on antibiotic treatment of ITP in particular, and auto-immune diseases in general.
My point in posting this is to learn whether anyone else on the PDSA discussion group has seen similar variations in platelet count with antibiotics. Of course, long term antibiotic treatment may not be a good solution since it may give rise anti-biotic resistant bacteria that could be fatal.

Stan:

Good luck with your experiment. Antibiotic use for ITP isn't done often so I haven't really seen any good results from it. I believe that anything is possible though, so it's worth a shot.

The general theory behind gut problems though is that usually the bad bacteria overtakes the good, and antibiotics are a good source for destroying good bacteria. You'd think that antibiotics might have a negative affect, so it's interesting to see if the reverse could hold true.

Antibiotic prophylaxis is often given for CVID and to those who are HIV positive and they don't go on to get fatal bacterias because of it although the dose isn't all that high.

I agree with you about the chronic infection theory. Although nothing has been proven, I had had reflux for ten years prior to going onto daily antibiotics and within a month it had completely gone and has not returned, so something changed. I don't believe though that the antibiotics has had any effect on my platelet count as I had gone into a sort of remission before I started taking it.

Which antibiotic seemed to clear up the reflux? I've had it for 19 years and antibiotics have never helped it. It just gets worse all the time even though I don't believe that could even be possible.

Septrin. I'm sure it must've been that. I'd had reflux for years, it got so bad I'd get it after eating anything at all and sometimes at night I'd wake up choking and had to sit up to sleep. One month after the septrin and it was gone.

I can't take that one, can't have sulfa - gather it is ok though if one has penicillin allergies. If I found it right it's called Septra or Bactrim here as brand names [Co-trimoxazole, the generic]. A combo of trimethoprim and sulfamethoxazole and is in a class of medications called sulfonamides. Too bad, had thought to ask the doctor about it.

When I took Septrin years ago for a UTI I had a reaction in a rash. This time I have nothing. I have also had a penicillin reaction in the past but went through testing for allergy to that more recently and that was okay too. So these allergies do pass, unless of course they are serious reactions in which case not worth the risk. I only take a small dose of Septrin.. 480 mg a day.

My immunologist always has his patients do the penicillin allergy testing if there's doubt as it is good to have that drug available for infections. I keep a stock of it at home for when I need it for ear or chest infections. It's worth doing the allergy testing if you can, it takes almost a whole day so you do need the time.

This is an interesting theory. I may need to get a cbc done when I'm on antibiotics next time.

I can't take Sulfa drugs either. It's contraindicated in Lupus. I get reflux like that too....wake up with a mouthful of acid. I also get it from bending over and sometimes just for the heck of it. I take Acifex but it doesn't always work.

That's a shame because I found the reflux to be worse than the ITP. Sulfa drugs are also used to treat IBS and that sort of thing so it's not totally unexpected although it's not a recognised treatment. In fact Septrin isn't prescribed much in the UK now. I've had two GPs be surprised that I'm on it.

Having had serum sickness due to taking amoxicillin I was told not to take a penicillin again. From what I gather my reaction to sulfa was an unusual one.

I am new to ITP; have known that I have had it a little less than a year. So far my levels have not dropped below 20,000. I have only tried short-term steroids for treatment but they only provided a short-term increase. The side-effects from the steroids were so terrible i don't want to have to take them again. I have been doing a lot of research and this topic of chronic gut infection has piqued my interest. I always have stomach problems - gas, bloating, pain, etc. but no doctor has ever diagnosed anything for me other than to tell me to take omeprazole when i need it. So I am trying things with my diet to help with stomach problems and hopefully ITP. I eliminated gluten for about 4-5 months but no increase in levels yet.

I am wondering, from those of you who have been trying things for awhile, would it be a smart next step to talk to my doctor and get tested for this H. pylori I am reading about? I take anti-biotics on average of once a year for either sinus infection or dental problems. I don't like to take them too much because of the destruction of good bacteria. I have not been tested for platelet level during a round of anti-biotics but i am going to ask my doctor about this.

I'll keep you posted on any new thoughts, results, etc. on this. Appreciate all your thoughts and experiences. Thank you.

I would ask my doctor to test for h-pylori - then you know for sure. Chances are though...

If you need an antibiotic you need an antibiotic - possible repercussions from not taking one when needed wouldn't be good. (I always think of the man in jail here who had a sinus infection that wasn't treated properly and the infection went to his bone - no thank you, I'll that the antibiotic!)

When I have to take an antibiotic I eat yogurt - but I always take a probiotic daily anyway. [even our cat's vet told us to give her plain yogurt when she had to have an antibiotic]

Good luck and keep us posted.