Anyone with ITP from birth to adulthood

I've ITP from birth and was told that it will be cured few years down the line or at least by the time I'm a teenager. But in my case, now I'm in mid 30's, the condition never improved. After few years of treatment as a child, I never continued treatment assuming the condition will improve gradually. But lately I was again diagnosed with ITP, with a very low platelet count(10k). Since then, I've been treated with IVIG, Prednisone, Rituximab and Promacta - but none of them gave a long term solution. The count goes up for a week or so and then drops drastically. Right now I'm on Promacta and the dosage has been tampered over the months, but there isn't much of an increase in the platelet count. As the dosage is reduced, the platelet count goes down. Did a bone marrow test and result confirmed ITP.

I consulted few doctors, and all seem to wonder why ITP diagnosed as a child hasn't gone away when I turned an adult. Has anyone here been an ITP patient since birth and still has the condition? Anyone who hasn't found all these medications helpful?

Please share your views!

Thanks,
Jay

I'm confused. Were your counts down your entire life or did they just recently drop again?

Promacta is a maintenance drug, meaning that you have to keep taking it to maintain a count. Usually, the dose will be adjusted until the count stays around 50k, then that dose is held for an indefinite amount of time.

I'm not sure why the doctors would be confused about chronic ITP. It happens all the time.

Yes, the count was low all the time. Doctors say itp diagnosed at birth should have gone away as I turned adult; the chances of itp diagnosed at birth carried over to adulthood seems to be rare.More over, none the medications have been effective so far.

Is it safe to take Promacta for longer periods? I've been taking it since 8 months now. I've been told that it affects the bone marrow.

I'm a male and we have plans to have another baby. Does taking Promacta have any adverse effects on family planning?

Hi NewBie, it's true the majority of babies will not have chronic ITP but not true of all. But then ITP itself in adults is pretty rare so some doctors haven't seen much of it at all. Best to find a doctor who treats ITP on a regular basis and keeps up with all the research.

As for Promacta, they should be looking at the blood closely monthly when they will be able to see by the shape of the blood cells if the drug is adversely affecting the marrow. In trials it only did so at very high doses and when the drug is stopped the marrow fibrosis reversed. It is usual to take Promacta for as long as necessary, usually many years. Sometimes the count will go too high on the drug and when stopping it, the count stays up. It does seem to push some into remission so not everyone has to stay on it indefinitely.

The likelihood of a cure is very remote.

Today most drugs are developed by Pharmaceutical Companies so they are only going to invest in developing new drugs which will earn them money.

It is more financially beneficial to develop maintenance drugs such as Promacta and N Plate then develop a cure.

I prefer to think that drugs like N-Plate and Promacta are a very good treatment alternative while a cure is being discovered. Most autoimmune disorders have no cure and the reason is that they are very complex.

Newbie - there are people who have had ITP their entire lives. Finding a doctor who knows what he is doing is important if you want to manage it properly. If your doctor keeps trying to taper you off and your count is dropping, he's not following protocol. I'm not sure how Promacta affects a male as far as trying to have a baby; I've only seen data regarding women. Maybe the manufacturer's website could give you some insight.