question .. just thinking if I dump the med's and just

[exxxon]

do a transfusion once a week and shoot way up .... it's temporary I know maybe get a week out of it ?? then when it drops into the danger zone again I just go do another transfusion .. that way no more of the killer med's . I would rather sit for a transfusion once a week than take the poison .. anyone schooled in this ?? is it plausible .. I am in the Philippines for a while and noticed a blood bank and they had platelet bags for 1000 pesos per bag // that is 20.00 u s d .. cheap / just thinking out of the box guys .. we need a cure though .. tks .. jimmy

[LifeafterITP]

' Killer med's ' is a bit extreme choice of words. I have been taking Eltrombopag (Revolade, Promacta) daily for that last 5 years, it has kept my platelets at a safe level with no side effects and my ITP is under control.

There is risk in everything we do, even a blood transfusion has risk and a weekly one even more so.

[Keepingspleen in reply to LifeafterITP]

I just started on Promactal 2 weeks ago and so far so good. Can you please tell me what range your count seems to stay in or does it fluctuate all over ?

[LifeafterITP in reply to Keepingspleen]

My count was 13 when I started Eltrombopag (Revolade, Promacta), within a couple of weeks it was up to 140. It then started to jump up and down between about 70 and 140. After about 3 years it was consistently around the 150 mark and after 2 years at that level my haematologist decided to reduce my dose from 50mg to 25mg / day.

I have been on the lower dose for 6 months now and my platelets have been in the 60's - 70's. I am happy with this level , I have no symptoms and feel completely healthy.

Eltrombopag (Revolade, Promacta) has allowed me to live a normal active life. I know other are not so lucky and are searching for something that will work for them.

[Keepingspleen in reply to LifeafterITP]

Thank you

[Lynney11 in reply to LifeafterITP]

I have been on Eltrombopag for 3 years - 25 mg daily with hardly any side effects to speak of, and a sustained count of around 125. No idea why exxxon would say ‘killer meds’, although I suspect he is frustrated at the lack of progress and cost of any meds he is on.

[exxxon in reply to Keepingspleen]

in the low 40s for the past year but 2 weeks ago it dipped to 21 so I bumped up the dosage to 75 mg.. let you know the results next week . jimmy

[exxxon in reply to LifeafterITP]

HEY LIFE AFTER !!! what is your count ?? how much promacta do you take ?? on 50mg. for a year and stayed in the 40s .. dipped a couple weeks ago so they bumped me up to 75mg. no side effects either .. its a miracle drug but how long it will last is unknown .. stay well .. jimmy

[RobertSp]

Some notes to consider: The normal lifetime of blood platelets is only a few days. For people with ITP, the lifetime for platelets is even shorter. When transfused with platelets from someone else, the lifetime of the platelets should be even shorter. And repeated transfusions have other disease and health risks: AIDS, Mononucleosis, etc. If the meds are really uncomfortable, I suggest asking your doctor about alternative meds. There are severalt ochoose from.

[exxxon in reply to RobertSp]

thank's for that info bobby .. jimmy

[prudencepayes]

I did once enquire about using platelets instead of IVIG and I was told that in ITP patients infused platelets only survive for a day or two, which chimes with RobertSp's response. Best to leave platelet infusions for emergencies like urgent surgery I would say.