Anyone in Tampa.Fl . I've had ITP for 18years who has ITP?

[opera1]

I've had ITP for 18 years. Are there any ITP support groups here?

[exxxon]

in clearwater .. just diagnosed last october .. only group i know of is this one here .. what are your count levels ?? what meds you take ?? promacta has me stable last 5 months and hope for remission ??? ugly disease .. considering spleen removal but need more information .. stay in touch .. jimmy

[opera1 in reply to exxxon]

Iv'e had ITP for 18 years. I know the warning signs. It comes once in a matter of hours. Last count at Dr's office was 1,000. By the time I got to the hospital , it was zero. Scariest ever. I get prednisone, platelet transfusions , IVIG transfusions, and Rituxan. Possibility of infections if spleen is removed.

[exxxon]

operal // so in 18 years you at least did not bleed out cause at those levels it becomes life threatening .. nov. 2018 i was in the tampa airport boarding a flight to the philippines and my doctor called and said get back asap. i was at 6 thousand and would have bled out .. thought it leukemia but diagnosed with ITP ( lucky i guess ? ) they put me on prednisone and did not sleep for 3 weeks .. went to hard rock every nite and lost a ton after that the promacta got me up to mid forties with zero brusing .. have you tried promacta .. there was a conference in orlando last month sponsered by ITP support .. wanted to attend but out of the country till feb. how old are you and how do manage the brusing .. please try the promacta but its 9 thousand $ for 30 pills .. surreal price .. military picks up my cost .. keep talking with me .. jimmy

[AnthonyHeard Administrator ITP Support Association]

Hello opera1, if you get in touch with the PDSA in the USA they will let you know of any local support groups in your area... the following link will hopefully help ...

pdsa.org/support-groups.html

Hope it helps and best of luck.