TOPIC:

Hi everyone, I am new to this group and I am happy to have found a forum for parents of children with ITP.
My son was diagnosed in June, 2016 so we are about to be classified as chronic. I am trying to see if anyone has a child with ITP and taking Flonase.

I did a few nights of research trying to see if Flonase (my son was on this for nonallergic rhinitis) could cause the platelets to drop. I finally found a few articles establishing a link. When I showed the information to our hematologist she wasn't convinced but said to stop the Flonase. We stopped and retested 30 days later and the numbers were exactly the same (60). About two weeks after that (45 days post Flonase) my son had to go to the ER after he banged his head at the school playground, his platelets were at 79. We retested today about 57 days post flonase and we are at 70.
Despite our hematologist telling me that the platelets would have gone up by now if the ITP were caused by the Flonase, I disagree....I called a pharmacist today and he said the steroids are out of my son's system but the effects can be longer lasting. However he could not say how long. The hematologist wants to do a genetic test in a few weeks for a mutation linked to ITP, we consented to the test but I think that will not lead to any answers. (His levels at age 3 were 152, age 4 202 and age 5 275.)
I gave the hematologist an article on flow cytometry and drug dependent platelet antibody tests...hoping to find out if the Flonase caused this. I wish I never put him on that nose spray, the warning label omits the link with ITP.

Hi Victoria. I would like to say first to try not to get hung up on a chronic label. ITP can resolve at any time, regardless of whether or not a child is chronic. All chronic means is that the child has had ITP for longer than a year. It doesn't mean that it will be forever. I've seen many chronic children go into remission.

As for the Flonase...anything is possible. ITP is a side effect of nearly every drug, including vaccines, but it usually can't be proven. Stopping the drug does not always resolve the ITP because there is sometimes a chain of events that starts the antibody production and it doesn't just stop when the drug is stopped. My only poor comparison is a car going down a hill that loses its brakes. Don't blame yourself. Antibiotics can also cause ITP - would you blame yourself if he had to take one for an illness then got ITP? You were only doing what you thought was best for your son. All drugs come with a very long list of side effects and most people don't take them seriously, they just want the drug to do its job.

Hi Sandi, thank you so much for your reply and for the information. My issue is that Flonase does NOT list ITP on its warning label. Since it went OTC the label may have been adjusted (the negotiations with the FDA when a drug goes OTC are not always smooth and the pharma companies put a lot of effort into reducing the info on the warning labels). I did some research and the incidents of ITP occurring with Flonase is about double the average incidence of drug induced ITP. When Flonase went OTC it generated about 400million in sales during its first 3 months - there is a huge profit incentive here for omitting information. I am trying to find out if there is a test (Drug Dependent platelet antibody test) which will detect whether Flonase was the cause. It is very scary that kids are on this medication and not being momnitored for ITP! We caught it during a random CBC. Very frightening.

I totally understand that frustration. I could go on and on about drug companies and side effects, but I won't. As far as I know, the only things that can be detected with an antibody test are antibodies to heparin and quinine.

ITP is listed on most drug inserts, even ITP treatments. It's odd that Flonase doesn't list it. Have you reported it to the FDA? I had to report a side effect once after having Rituxan. Most doctors don't do it and that could be why ITP isn't listed for Flonase. The last phase of every drug trial is what happens with the general population after a drug is released. A side effect won't be listed if it isn't reported.

Hi Sandi, I called the Blood Center of Wisconsin - the same lab they are sending my son's blood to for genetic testing (to see if there is a mutation). ***They told me they can test in vitro his blood with the Flonase (so I do not have to expose him to it again to see a result). An article on FactMed.com indicates that 136 patients reported Flonase causing ITP (1.0620%) while the average percentage of all (any drug) causing ITP is .2343%.

Maybe I am going on too much of a goose chase but my gut feeling tells me this fat soluble steroid administered (by me!) to my son for over a year....caused this.

Also, not sure if I mentioned this before, I found an article indicating that nasal absorption isnt as safe as previously thought - in fact steroids absorbed from the gastrointestinal track undergo degradation in the liver so less active metabolites reach the end organs. This does not occur with nasal administration. ***And where rhinitis is present (swelling of the nasal passages - which Flonase treats) - there is greater absorption of the steroid.

Lastly - I just found an article stating that "easy bruising" may be a side effect. Its like the Pharma Co is dancing around the issue?
I greatly appreciate your informed responses! Victoria

Yes, sometimes they list 'bruising' or even 'thrombocytopenia' instead of ITP. Big difference. It's listed this way on vaccine inserts too.

Hi Sandi, two weeks ago my son had a drug dependent platelet antibody test done by the Blood Center of Wisconsin, it just came back negative as they usually do. I still believe Flonase caused this so I reported it on the FDA website late last night. I want to contact the Wisconsin Blood Center to see if they tested the drug itself or its metabolites....I think our hematologist thinks I am completely wrong and I was wondering if you had any suggestions on other tests that could be done? He is up to 75 platelets and I really do not want to reintroduce the Flonase to establish causation. (He was at 275 platelets before starting the Flonase). I read somewhere there is an EIA test (Enzyme Immunoassay) but I am kind of clueless at this point.

By the way I also came across an interesting blog from 2006 wherein a patient states that her nurse practitioner was screening her for domestic violence due to her extensive bruising - and that Flonase and Flovent caused the bruising. There is no contact info on this blog though!
Thanks,
Victoria

Victoria - it's very hard to establish Flonase as the cause if your son had been using it for a year before he was diagnosed with ITP. If he had been sick, on any antibiotics or had any vaccines prior to diagnosis, those could just as easily have been the trigger. As far as I know, there are no tests to establish cause and believe me, everyone is left clueless after diagnosis. We all have theories, but none can be proven.

I've used Flonase with no problems, but did have two very quick platelet drops after using Amoxicillin. I stayed away from it for years then began using it again with no problems. Go figure. Everyone reacts differently to medications and every drug has the potential to cause ITP (or other horrible side effects). It's all benefit vs risk.

I'm glad that your son is stable for now, that is great! Hopefully, his counts will keep going up.