COUNTS AT 15 FOR THE LAST THREE WEEKS

Hi PDSA family for the last 3 weeks my dr has called and said my platelets are at 15 has anyone experienced counts not changing week after week, I have stayed with low counts since being diagnosed 2 months ago the dr also told me I need to consider spleen removal since I stay in the danger zone and nothing has worked still on 40mg of predisone they want to ween me off the pred and try me on danazol which is a 500 dollar a month prescription..cant afford so its still sitting in the pharmacy..

Kym, my 14 year old has had roughly that count for the last year and a half - his count is normally between 5 and 15. I'm not in the US, but I've seen people mention that the big drugs companies have programmes to help you access Nplate/promacta. Would that be worth trying?

hi alisonp thx 4 responding i am not sure but will chk into it and i did discuss other treatment options with the dr once he mentioned spleen removal i told him that was not an option 2 months into be n diagnosed he said when i come back mid dec will talk other options. did u ever find any treatment to raise your childs count everything i tried has only been temp( dexathsone IVIG and 100mg of predsone which has been tapered to 40mg and has never worked at any dose

He's only ever tried steroids (didn't work much) and IVIg (horrible side effects and only temporary). In the UK, I think we treat less where there aren't bleeding symptoms and especially in children. My son gets on fine with the platelets he has.

If you are not in for splenectomy, then ask about rituxan and/or TPO drugs like Nplate/Promacta. I've definitely seen people on these boards getting financial help towards them. Good luck!

Look at other treatments, get away from those steroids. And after 100 years of being the 'standard treatment', I think the splenectomy for ITP should just quietly go the way of leeches. Seriously; splenectomy has been used to 'treat' ITP for 100 years and Prednisone has been around for like 60 years. Neither treatment is new or innovative and neither is ITP-specific.

The new drugs are expensive.....it's not a bad thing to ask their manufacturers for assistance.
If you can't afford a treatment, talk to your doctor and the hospital's patient assistance person (That is what they do). I've taken Promacta for the past 3 years...it costs around $6,000 per month. My wife lost her job last summer and we switched to my company's insurance, my new co-pay was going to be $1400. I could not afford that, so I swallowed my pride and talked to the hospital and my hematologist. They got me into the assistance program with GlaxoSmithKline; I pay a $70 a month co-pay.
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There was an entire month where my platelets stayed at 15 and I was on steroids. Little did I know that my body was lacking essential vitamins. I saw a naturopath and just by adding vitamins to my diet, my platelets went up to 50 after that month and went down to the teens only if I was sick or something. Make sure you've exhausted all options like taking your multi vitamins, Vitamin C, D..etc