52k finally......after 11 weeks of Promacta

After Cyclosporine stopped working in December, I bit the bullet and started Promacta. I've been taking immune suppressants for years. Each has stopped working for me after around 2-3 years.
This week on Monday, my count finally went up to 52k. I've been 11 weeks on 75mg/day of Promacta. In January, the count was 4k, went to the low/mid teens for the first 6 weeks, made it to 32k on week 7...finally it's 52k. I cannot recall the last time it's been above the 30's, except for quick boosts with 40mgs/day Dexamethasone. I've never known a count over 90k, 52k is cool.
For me, the constant side effects of Promacta are; nausea, creepy crawlies (skin crawls), and loss of appetite. But hey, I've lost 10 pounds already.
Luckily, my insurance covers the $8000 per month cost, after a $60 co-pay.
I'm interested in seeing how long Promacta works for me. I seem to get about 3 years before needing to change meds. I'm also interested to see if I can back off to a lower dosage soon (I hope).
Life goes on and I still have my spleen. I like my spleen. I've become quite attached to it over the past 57 years and I am not done with it yet.

Jack that is great you finally have a response to Promacta and you have adecent count, happy for you!

Sorry about the side effects though, that can't be fun. I know 2 who are on it and I don't recall them saying they have side effects. Hopefully those will go away!

You're off to a great start except for the side effects, crappy.

I find it interesting that you've seen this pattern of a few years. Overall I have seen a similar trend but with shorter spans of response. I think for some of us our platelet antibodies get smarter and eventually work that much harder against the treatment.

Congrats on the platelet count Jack! I have a question though. I'm about to start Azathioprine (Imuran) and I want to know what has been your general experience with immune suppression? Did you find you got sick, colds flu's more often than before? Also what type of precautions did you take if any?

I used to be on Cyclosporine years a go too, but after a while it stopped working for me too and once i stopped that, i said never again to the Cyclosporine.

I think for some of us our platelet antibodies get smarter and eventually work that much harder against the treatment.

Yep, everything adapts. After 3 years of Cyclosporine, it not only stopped working entirely, but my platelets started to get markedly larger too boot.

I want to know what has been your general experience with immune suppression? Did you find you got sick, colds flu's more often than before? Also what type of precautions did you take if any?

Everyone is different. I got ill fairly often on immune suppressants. Caught pretty much everything that came my way. Promacta is not nearly as bad (for me) to live on. I can deal with minor stuff. Now I am sorry that I quit my band last Fall, I could have stayed if I had been on Promacta then.
I took no special precautions, other than the special precautions we all take anyway.

What's wrong with large platelets? When I asked my doc if larger platelets helped clotting better, he said no, but newer platelets are usually larger than older platelets. Sometimes my lab report shows I have large (and once enormous!) platelets, and this has never been a source of concern to my hema. Karen R

Good luck with the Promacta. I took eight doses of it in June of 2009 and I'm still in remission. I've had ITP for over 16 years fought it with drugs the first 9 then had my spleen out and had a 3 year remission..then it came back at a count of 1 and had bleeding issues. Tried the normal round of drugs then was accepted in the Promacata cares program..took it 8 times and stopped. Have not taken any drugs since...Knock on wood...

Wishing you the best.
DJ

I've always read that large platelets do aid in clotting. They are reticulated platelets (new). That is the reason that people with ITP do better with low counts than people who don't have ITP and have low counts.

Thanks Jack, I'm buying a gallon bottle of Hand sanitizer. LOL