Feedback wanted on updated 'warnings' page

We've updated the 'warnings' page on the PDSA web site, adding much new information and references. Since so much of it is new, I would like your input on the content. Is it easy to understand? confusing? helpful? lacking?

You can find the 'warnings' page at www.pdsa.org/about-itp/warnings.html or under the 'About ITP' section at the top of the web site.

Thanks for you input.

Joan

Joan you can add Diphenhydramine to the list. Although I found it funny my doctors give it before my Rituxan infusion. Here is a link that list low blood platelets as a side effect cold.emedtv.com/diphenhydramine/diphenhydramine-side-effects.html

WOW: Never new so many things are related to so many problems. I amazed to see all the listings. Seems like I can find several culprits in most every category.

It might be helpful to rank the listings as to Occurance and Severity. But this would be a monstrous undertaking. In the meantime, the overall list does provide the guidance to help us research our own problems. THANX

I think people need to use the list with caution. It can be a bit like saying that some people are allergic to peanuts so I'd better not eat them. It's an unnecessary restriction. Most drugs and a variety of foods can cause a thrombocytopenia but the chances of them doing so in a particular individual are extremely slim.

Everything can cause platelets to drop....except PopTarts!! :laugh:

In terms of ease of use, I think the format of the warnings page is fine. It was interesting to see a link about Onyalai, which I'd never heard of until Keeth Smart got it and was written up last year.

Ok, am I stupid or what? I don't understand this:

Below is a list of drugs that have been most widely reported to cause low platelets. This list includes the generic name (Brand name) – use.2

Then it says....
danazol (used to treat endometriosis and ITP)

If it's used to treat itp...then why is it on the list...am I missing something because that is a complete contradiction to me...

I'm sure you smart ladies could explain :0)

Natalie

The list under the 'Drug Induced Thrombocytopenia' section on the warnings page was taken from a presentation by Dr. James George at the American Society of Hematology meeting last December. Someone in his lab searched the medical literature to find all articles of drugs that have been reported in the journals to cause low platelets. Then he and staff picked the drugs that had the most citations and where the research made it clear that the drug was the problem. They found 21 drugs that had 5 or more journal articles published. That is the list that is on the treatment page.

From your and other feedback, I can see that publishing the list on the warnings page is confusing. Most people who take the drugs on the list do not develop antibodies to them that cross-react to platelets and cause thrombocytopenia. That includes danocrine. Most people react to that drug the way it was intended.

However, the important message from the warnings page is that people can react to many drugs and substances in a way that causes their platelets to drop and that is something to consider when ITP is diagnosed or platelets drop unexpectedly.

We'll find a way to get that point across on the page in a different way.

Thanks to all who reviewed the page and provided feedback. Appreciate it.

If there more questions, concerns, or information, please post.

Thank you Joan for your continued efforts in bringing together and updating so much helpful information for us. I think you've used the appropriate wording and explanations.

My preference is to see the date the information was last modified or updated at the bottom of the page.

Michelle