Suggestions?

I have been on Prednisdone, all different amounts, and have had treatments of Rituxan with only side affects and no effect on platelets. I've had all my vaccinations in case of a splenectomy but we have all agreed that would be a last resort. The past few months my dr has been using costly IVIG to keep my platelets up with weekly cbc's. I respond very quickly to ivig and after so many sessions we have mastered handling the side affects. A few months ago he looked into an injection but decided against it bc a side affect was compromising bone marrow. Is this NPlate? What of Promacta and are their certain guidelines for it? I have heard of a lot of things on this board that have never been mentioned to me and recently approved by FDA. I just had to switch docs because he went to a hospital out of town and since I feel like I've fallen under the radar. Any treatment suggestions?

I'm on NPlate. It is a weekly injection. The warnings do mention potential problems with your bone marrow, but they are very slight. Go to nplate.com, there are all kinds of answers there. One of the side effects listed is insomnia, but it's the opposite for me! I can't get enough sleep. It's driving my crazy! It has brought my counts up though. First week was 377, next week 337 and last week 168. They adjusted the dose because the 377 and 337 were to high. Also, NPlate is a short term thing. When you stop the injections your counts go down right away. I'm starting Rituxan this Friday. Kinda anxious about it.

Promacta has some scary sounding possible side effects but they are super rare and easy to monitor. My hemotologist had me and another patient on Promacta. I didn't respond but his other patient is so like all ITP treatments you just have to find out what works for you. Part of taking Promacta is that you enroll in promacta cares. They will find you a pharmacist and help you find finacial support. Without insurance it is very expensive so they help you find funding. Normally you take a 50mg dose daily. You have to take it on an empty stomache and cannot have food or certain suppliments (iron, etc..) within 4 hours of taking it. Possible side effects are bone marrow scaring (which will decrease and go away if you stop taking it), liver function (Your doctor will monitor this) and clotting issues if your platelets go crazy high (like above 800,000). I took 50mg for about 6 weeks, then bumped up to 75 mg in order to raise my levels prior to splenectomy. I had absolutely no side effects at 50mg and felt slightly worn out at 75mg.

My treatment experience is similar to yours. My IVIG is covered fully by my insurance. It is one day of inconvenience, but it keeps me going for a few months before I need to treat again.
I am not sure that Rituxin has no effect on me. It did not raise platelets on its own, but I am convinced it works along with the IVIG. Mind you, my doctor disagrees. What does he know...I watch doctors on tv. (chuckle)
I considered n-plate and promacta, but I did not have the courage to face the possible side effects.
For a seemingly invisible disorder, the treatment options stink. what a to do.
Jean

After immune-suppressants stopped working for me, I started on Promacta last January. Went from 2k to 14k over two weeks doing 50mg/day, then upped to 75mg/day. My last count was 52k (which is fantastic for me!).
The cost question had me balk at starting Promacta earlier. My 75mg/day prescription is just shy of $8,000.00 a month. Luckily, my insurance covers all but $60.00 .

Side-effects of Promacta vary with the individual, like everything else concerning ITP. Since you must be enrolled in Promacta Cares, you are monitored closely. OVERALL; Promacta's side-effects so far have been easier to deal with than those of any other treatment I've done over the years. For me, Promacta's main side-effects have been:
* creepie-crawlies (10,000 dancing spiders)
* nausea
* loss of appitite
* sleep problems
* weight loss (although, this has been a benefit for me really)
Some of these effects have lessened a little over the past four months.
I normally take my dose around 2:00am-3:00am. That way, much of the first wave of nausea has passed by the time I get up at 5:00am to go to work. It doesn't take long to figure out what works for you and work it into your schedule.
The jury is still out on Promacta. It works for me so far...but it is a new drug.
I'd say the best part of Promacta is that I no longer get every little flu/cold/whatever bug that comes along.