New Member - where is good infomation

HI:

I am a new member to the forum. I have just passed the 1 year mark since being diagnosed with ITP. I started out just wanting to get my knee fixed and then my blood tests found my ITP. I started the usual prednisone treatment and that only made things worse, then I went to the fun chemo treatment of Retuxiban and that dropped me down to 12K. So after 2.5 months I went on Nplate. For me Nplate works. I receive an injection every 3 weeks and it keeps my counts abode 60K. But I hate the tiredness and aching that comes with it.

My questions is there a good source of information on the the disease. I just find the standard laymen information, or the clinical reports. Even though I am technical I do not want to have to learn to read them, and then see if it is any value for me and my problems.

The forum seems to have a lot of people with knowledge from their own problems and responses., but I do not find anything that pulls all the information together.

Welcome to the fourm. I would suggest searching the internet for further ITP info. I find this fourm a very good source of info. ITP affects us all differently and we all respond differently to medications. Personally, I feel the trigger for my ITP is stress. I think there is a wide range of triggers for this disease.

I think the best introduction to ITP is the most recent international guidelines
bloodjournal.hematologylibrary.org/content/115/2/168.full

After that it's a matter of deciding particularly what you want to know about and searching. I use google scholar for searching scholar.google.co.uk/

I too am on Nplate and have also cut down from the weekly injections. Was doing fortnightly but am now experimenting with even less.

Ann posted a great link. There isn't much in layman's terms that I would consider reliable. You can also ask questions here - many of us have a good understanding of ITP after having it for years and years.