treatments

I was diagnosed with itp in 2011 when i had blood drawn for the first time. We had never expected it, or even heard of such a thing as itp. Of course growing up I constantly had massive bruises and often petechiae, but even when the petechiae was shown to a doctor when i was young they said it was nothing, just allergies. So when the doctor called not even a full three hours after i had my lab work done we were highly concerned. I went back to the doctor immediately after the call where my doctor started describing the situation. I was only 13 and i wasn't all that concerned. I hadnt fully understood how bad it was going to be or how serious until after my first round of prednisone (about 2 weeks) and my count dropped instantly. the prednisone had worked but my count wouldnt stay high once i stopped the medicine. My hematologist then took the next step and sent me for an outpatient treatment, which was winrho. The winrho was successful but of course the results didnt last. I was eventually put back in the hospital to try ivig which had the same, or at least almost the same, results. Every four weeks i was back in the hospital for more treatment, either winrho or ivig. eventually my doctor decided that this was something that was not going away and i was then treated with rituximab. this was by far the harshest treatment i have ever been on. When it was almost my one year mark of being diagnosed the treatments' effects started to not be as successful as before. My platelet count wouldn't rise as high and last as long. So in 2012, one month before the year mark, my doctor suggested a splenectomy and for a few years it lasted and worked! but then unfortunately in August of 2015 i noticed the bruising, the weakness, fatigue, aches. and sure enough my count had dropped to around 50,000, the lowest it had been in nearly three years. I was prescribed prednisone which i stayed on for about three months until i was approved to try promacta. So far promacta is working for me, but the side effects just aren't worth it to me. I cant eat, I've lost at least five to ten pounds in about three months (which i was already severely underweight), i am nauseous constantly, headaches, body aches, and it is effecting my sleep. I was wondering if anyone else has tried this fairly new treatment or if they have any suggestions. I would like to know more about other treatments, others' results of them, anything that can help me. It is to the point that i would almost rather live with a count of 15000 than to continue with this treatment

Bethany:

Most people end up with Promacta as an end result and find that it's the best of the bunch as far as side effects and success. Most of the treatments that you mentioned, IVIG, Win-Rho and Prednisone are temporary for most, so that isn't surprising. Rituxan doesn't work for everyone.

What are your counts with Promacta? Is it possible to try a lower dose to reduce the side effects?

So far the first time i had my count checked since starting the medicine it was about 120,000. then about two weeks later it was only 60,000. Before starting it i think i was somewhere around 20,000.

What dose are you on? It is recommended that the dosage is adjusted so that counts stay around 50k. Counts should not be maintained in the normal range. You might be able to adjust the dose down a bit after you are on it a bit longer. Also, if you've just started it, the side effects might diminish in a few weeks or months.

I am on 50 mg a day. I had researched nplate before starting promacta and it had reallt caught my attention. I much rather get it once a week than have to take a pill every day that affects my eating. My main concern with promacta is that Im honestly horrible at remembering to take my medicine and I'm already underweight and with the promacta I can't eat and then I get sick from not being able to eat when I take it, so I end up going all day with very little to eat. I'm currently 5'9" and only 103 pounds. My doctor never fully explained to me what nplate was besides a weekly injection. I'm curious to learn about other treatment types, especially the nplate

50 mg's is a high dose and may not be necessary. You might be able to get by with 25 mg's, or even alternate 12.5 mg's and 25 mg's daily. The side effects might not be nearly as bad. Some people take their pills in the middle of the night and it doesn't affect eating as much.

You could switch to N-Plate, but traveling/vacations can be difficult. There are pros and cons to each of them.

Bethany..I ruled out Promacta because I work shifts so it would be difficult to have a set time to take it. I'm on N Plate but over here in the UK we self inject so it makes things a lot easier than having to go to a clinic every week.

Are there any effects to nplate? Like any that cause problems for you?

Slight muscle aches if I've been too active and sometimes feel a bit tired but nothing dreadful compared to steroids,azathioprine or MMF

My 15 yr old daughter was on 62.5 mg/daily of Promacta for 15 months and maintained platelet counts between 50-80k, then it stopped working. During the school year, she took it in the early afternoon. During the summer, she took it in the early morning (3 or 4am) and went back to sleep.

However, it stopped working for her after 15 months (no explanation). She is now on Nplate. After 2+ months, she is up to 5 mcg and it appears she is responsive (>100 but under 200k counts). Don't know if this is going to keep working, but it is for now. She self-administers the injection and doesn't seem to have any side effects.