Get me off this rollercoaster!!!

So I think I'm starting to lose my mind with constant rollercoaster ride that is ITP. My husband was diagnosed in February and we have yet to find a way to stabilize his counts. Prednisone didn't do it, WinRho didn't do it and so far it's been 2 weeks since his fourth Rituxin and that hasn't done it. He dropped to 4k last week so the doc did 2 days (about half dose) of IVIG (which in the past has been great for him when he did the full amount in the hospital)...he was at 84k on Friday. Went in for a check today - back to 4k. He just had the IVIG on Tuesday - that usually sustains him for a couple of weeks!! We were doing the IVIG as we waited to see if the Rituxin would kick in since I've heard it could take a month or more to see results. But I dont know what we can do now if the IVIG doesn't keep his counts up longer then 4 or 5 days.

I just don't know anymore. I don't know what to say to him to make him feel better. I don't know how to not live with knots in my stomach...this randomness...never knowing what the count will be, having no control over it. It's driving us crazy.

I am sitting at work feeling completely helpless while he sits and waits to see if the doc can even find some more IVIG to get him through the weekend. Thanks for letting me vent...

I usually don't post very often, but I have been on this roller coaster for 14 years. I have tried just about every treatment out there. After exhausting all of them and being refractory to so many treatments; the dr. got me on n-plate. The n-plate has been amazing! It works so well that my counts have been in between 96-300ish. The side effects stink, but being able to do things and go places without having to worry about if I get hurt, cut, or bleed is great! You and your husband hang in there and I have great faith that eventually there will be a silver lining.

Hi - I know how difficult it can be at first, but it does get easier. It can take longer than 3 months to find a treatment that works. Has he tried Decadron? That might be a treatment to discuss with the doctor. Some people have had success with that. If that fails, N-Plate might be an option too.

Try to look at symptoms more than actual counts. How does he do at lower counts?

It is definatly difficult at first but it really does get easier. Thought I would worry about it every day for the rest of my life. Now we just roll with the ups and downs which are much smoother than they used to be. My wife felt the same way, "helpless" during the start of this "rollercoaster" ride. It took me a long time to accept the fact that I had ITP and the more I accepted it the easier it became. I am sure the stress of having low counts is not helping either. You can say and do the most Loving things possible, it may help, it may not. He needs to mentally accept ITP as part of his inner healing. I know that this can take some time. I feel for you and your husband. I am so mad at ITP right now because of what you are going through. How is he feeling physically? Hang tough on the Rituxan. This is definatly a very Frustrating disease and what it's triggers are.
Keep us posted.
Seriously, if your Husband ever wants to talk to another guy that has been there, let me know and I will e-mail you my #.
Take Care

Thank you all so much. Hearing that others have gone through the same ups and downs helps SO MUCH! We both felt pretty discouraged yesterday but just knowing that it's ok we haven't found the right treatment yet makes me feel a lot better. I've come to accept the fact that we will have to be patient and have to except sudden drops. I don't think my husband is quite there yet. But it's getting better. He handled this platelet drop slightly better then the last and that is a sign of improvement for me. I can deal with the low counts because thankfully, he has no real symptoms. When is count was 4k last week there was one bruise on his side that popped up. But this week there was nothing, which I guess is why we were so surprised. So physically he's ok and we're working on the mental part.

We have an appointment with a specialist in NYC on Tuesday. Just for a second opinion, make sure our doc isn't missing anything. I will definitely ask about the N plate and the Decadron. They've also been talking trying Promacta maybe. So far all he has done is the steriods (no success) one dose of WinRho (severe migraine) and the Rituxin (last of the 4 treatments about 2 weeks ago). So I do realize we are very early in the process.

As supportive as our families have been - there is nothing like talking to people who have gone through it. Your support and words of encouragement have been invaluable to me.

Promacta is similar to Nplate although Nplate tends to work for a higher percentage of people. I've been on Nplate for over 18 months. It's better to try things that will get the count to stay up rather than have to keep treating but as a last resort Nplate and Promacta are there.

I think what you need to know is that having very low counts of 4 and so on is not going to do any harm. It's not somewhere you want to be long term although some here have been and nothing bad has happened to them. But there is no need to panic when his counts drop. There is no time limit by which the count has to be brought up. It's not like a heart attack where you have to get the heart going in three minutes or there's trouble. As you see that no harm comes to your husband, you will learn to relax a bit.

That's a great point Ann. Periods of time with very low platelets do not leave any kind of lasting effect on our bodies. If we come through it with no serious bleeds we are in as good shape as ever. And serious bleeds are rare events.
Erica

I'd ask about Promacta also.
I've been on Promacta for a year and a half now. Keeps me in the 50k range with minimal side effects.
Far less hassle to live on than anything else I've tried over 8 years.
Everyone is different and nothing is perfect, but Promacta works for me.
.

We met with a specialist yesterday and I think we're going to go with Nplate next. It was between Promact and Nplate but my husband likes the idea of having a shot once a week as opposed to taking a pill every day. So that is the plan for now.

Any experiences with Nplate would be appreciated. Thanks!

Hope the Rituxin starts working better. If not hope Nplate revitalizes his counts.