ITP
Posted , 4 users are following.
Hi i was diagnosed 2yrs ago with a platelet count of 9k. I was given 40mg day of predisonolone (horrible stuff) which quickly rose my counts but as soon as i started tapering my count hit the floor again and was put on 60mg day. This didn't work either so was told i need a spleenectomy. I found a fantastic support group called the PDSA platelet disorder support association website and with it the itp discussion page. It has lots of advice and everyone is very friendly and helpful some of which has 25yrs ITP experience. It tells you of all the drugs and side effects there are places for parents of kids and teens, other auto immune disorders too.
I refused the spleenectomy and put it as a last resort. I was told i could have IVIG which is short lasting or Azathioprine tablets to suppress my immune system. This is what i chose after a bone marrow biopsy (ouch) and with a count of 9k it took a few weeks for my counts to slowly rise and now my count is 320k with a reduced dose of 1 50mg pill a day with 3mthly blood tests.
Good luck to everyone going through this, especially at the begining when your terrified.
Julia
1 like, 3 replies
Guest
Posted
My husband has just been diagnosed with ITP a few weeks ago.
His platelets vary between 2 and 10. Docs have tried prendisolene, dexamethasone, IvIG and currently anti-D (Winhro). Two days after receiving anti-D he had his first uncontrollable nose bleed for 3hours. We are now just waiting for platelet counts to be done 7 days after anti-D was given. If this doesn't work, we are looking at a chemo drug called Vincristine. This is terrifying for me and for him and hopefully splenectomy may not happen. I hope one day this will be managed and we can get back to some normality with our two young children. Any advice / info is appreciated.
Kind Regards
Hannah
nimitha53591 Inca
Posted
My son had a viral fever with very high temperature. He has been diagonised with ITP with an initial count of 20000. The very next day again checked and is found to be 30000. But it didnt increseased. So he was given Prednisone at a dosage of 4mg/kg for 4 days. Just 2 days after the medicinesstarted, count was increased to 1.1 lakhs. In another check up again after 3 days, the count was 4.08 lakhs. So he was asked to continue prednisone with a dosage of 2mg/kg for 10 days, then 1.5mg/kg for 2 days, 1mg/kg for 2 days, .5mg/kg for 2 days and then to stop. Today he has finshed 1mg/kg dosage for the 2 days. The count was taken and is found to be 2.64 lakhs. I am little tensed on hearing this. The count is reduced. will the count again decrease once he stop his medicine?
janet73969 Inca
Posted
hi i had a splenectomy when i was 7 i'm now 64, had no problems with my health since, but feeling tired a lot, last time i had my platelets checked they where a bit low but not bad enough to have any treatment, i was wondering with my platelet count been a bit low could this be causing the tiredness ..