I like IVIG?

In the year since diagnosis, I've had the standard pred. for 4-5 mos and two rounds of IVIG when counts droppped to 10-15K. The first round lasted four months before back to 15K and just had second round a few weeks ago.
My dr. is suggesting rituxan as next step down the road (rather than IVIG again), but I'm a bit wary about side effects. I was nervous with pred. and IVIG too, and had no major problems, but rituxan is a more of a risk.
What I'm trying to say is that if I do ok with IVIG, it lasts 3-4 months, don't mind the extra treatment time, and insurance isn't a problem, then I'm thinking maybe just keep doing it for awhile. Maybe I was just lucky with the long effect last time, but part of me feels why rush into such heavy duty treatment as rituxan now.
My wife is even more worried about rituxan and wants me to do IVIG for as long as possible. I don't want to give in to unfounded worries about it when I know it has helped so many others and might me too, but maybe I'm just not there yet with my gut feeling that's the way to go now.
Of course, as soon as I say this, my counts will drop quicker this time and the decision will be easier!
Any thoughts/suggestions? Thanks!

IVIG is the only treatment I have ever found that raises my counts. Unfortunately, the boosts last only 3 or 4 days, but I sort of consider myself an IVIG junkie.

Rituxan is major league stuff and not something to be taken lightly. On the other hand, it has helped a lot of people who post to this board. I don't recall ever having any side effects from it, other than the basic headache and flu stuff (which is very treatable).

You know how expensive IVIG is -- if that's not an issue, and you get 3 or 4 months out of it, that's great and I'd probably keep doing that. Unfortunately, as you no doubt are aware, for a lot of people IVIG stops working after a while, or at least the time between treatments decreases. Maybe you will be one of those rare ITP'ers who gets a remission out of IVIG.

That's a tough call. I've never had IVIG because of the time issue. I did choose Rituxan because of the possibility of remission. I did get remission - I'm on year 6.

I will be the first to say that Rituxan is not to be taken lightly, however, most people do very well with it and have no problems. I've actually seen more bad reactions from IVIG (aseptic meningitis) than I have from Rituxan.

I have only had IVIG and steroids since the splenectomy and a mouthwash for the bloodblisters in the gums and zantag for the indigestion from the steroids :-}

Before the Splenectomy I have no idea what they tried altogether. They quickly worked out that platelet transfusion didn't work! The were gone before they got into my system :-} almost. I would have a 5 day course then the steroids would be tapered. My platelets would begin to rise by the end of 5 days.

IVIG lasted me a a very healthy length of time - been 8 years since the last course of IVIG. My platlets dropped this year a little (37) but not enough to treat - so far. But on the whole I have had a positive time with IVIG.

Though with me having Idiopathic Thrombocytopenia Purpula may be different but the treatments are all the same.

Thanks for the input. I'm off to see my grandkids for a week, so hopefully put this out of my mind until get home. I may just put the decision off till counts get down to maybe 25-30. Currently at 158K 2 weeks after last IVIG, so if will see how long it lasts this time. If alot less than 4 mos this time, may give Rituxan a chance. Like alot of times lately (and like Scarlett O'Hara), I think I' worry about that later - tomorrow is another day!

IVIG worked great for me for a good boost. I couldn't keep doing the treatments due to the cost. I would never do Rituxan. I did alot of research a couple of years ago and I won't touch it. (just didn't sound right for my personal health issues) I did do Promacta in June 0f 2009 and have been in remission ever since. (Oh and my hemotologist was not happy that I wouldn't take the Rituxan.) Just be firm in what you feel is right for your body.

Good luck!

Hi, I've been doing the IVIG and Dexamethsone for the last two months. I've been contemplating Rituxan (or the Veltuzumab trial at USC-similar to Rituxan). So far, I did not quality for the Veltuzumab trial as my platelets jumped up from 12,000 to 32,000 in a matter of hours--while I was signing up for the trail (something trying to tell me something here?). Anyway, I've been holding off just like you. I stopped taking my Doxipin at night to sleep--and my platelets seem to holding up a little better. I'm just doing the wait and see thing like you are. But, two stints in the hospital with platlets down to 1000 really do a number on your confidence. Right now they went up to 303,000 during my last blood draw--but then they can crash just as fast.

DeeDee,

Good luck I hope your counts level out at a safe range. Prior to the promacta I was in the hospital for a transfusion and more steriods. That was really the first transfusion of platlets that I have allowed and I only did it so I could go home. My counts fall so quickly to nothing it's very scary. I was happy with the promacta results and the fact I have finally starting loosing weight and have been steriod free for a year is great! It's hard to find what works for your body..we are all so different and respond differntly to the treatments. I wish you all the best!

I agree with you on the Rituxan. I still need to do more research. I really think while I was at USC getting signed up for their trial (which is just like Rituxan)that maybe I wasn't meant to do this treatment just yet. It was really weird since my platelets were at 12000 in the morning; I went there and filled out all the necessary paperwork, took the physical, and did their blood work. Then, on the way home from USC, they called me and said my platelets had gone up to 32000 (which disqualified me from their study). Every week since then, I have talked to the nurse at USC and she is upset with me (just a little) because I have't been able to follow through with their trial. She is hoping my platelets will go back down so that I can get back on the trial! I am hoping that they will stay up--at least for a while! I feel like I need a break from going back and forth to the hospital and not knowing what's going to work and how long my platelets will stay at a safe level.

I, too, don't know how much more my doctor can give me the IVIG due to the cost. But, I will take it just one day at a time--and enjoy the good moments while they last! You do learn to appreciate the good days and you want to go out and smell the roses!

Thanks, Dee Dee