New member & have too many questions

Hello Everyone,
I am new to this site, or better said medical problem.

Have beenon steriods for thelast 8 weeks hoping that my platelet count would bounce back to a normal level.

This has not happened, so now they are taking me off the steroids and am scheduled for my first infusion 6/7 hours of Rituxan and then three infusions of two hours each.

Truthfully I am scared, I have read all about what my problem is,but no one can tell me why all of a sudden I have it! Plus no one can actually guarantee that his infusion program will solve it.

Does anyone have any advice or experience that they woould be willing to share with me. What should I expect with the first infusion? how bad will I feel afterwards? And will Ihave to do this the rest of my life?

Please I'm scared.
Sandra Vavosa

Hi Sandra
Welcome to the boards. First, we all were scared when we first found out. And we all have been there in no one being able to tell us why we got this silly disorder.
I also was immune to the steriods. Didn't do anything at all for my numbers. Next for me was NPlate. Did a great job but I didn't care for the side effects. Then it was Rituxan for me. The first infusion of the first treatment took forever! 8+ hours. Only a slight reaction, sore throat, itchy ears, nothing to big. They stopped it for a little bit, gave me more benedryl and finished with no problems. The 2nd, 3rd and 4th went off without a hitch. I even went to work after them. The same day! That first round only lasted me a little over 7 months. The second round of Rituxan didn't do anything for me at all. Everyone is different though. Some have been in remission for a long time because of Rituxan. Number 1 thing to remember with ITP is that everyone is different. It could take as much as 12 weeks for the Rituxan to kick in. Some get quick results, but not many. I am currently on Promacta. It's a pill taken daily. It was working but lately it seems to not be doing such a good job. Please let us know how it goes for you, and ask, ask, ask. That's what we are all here for!

Hi Sandra. I'm so glad you were able to find us.

As Gretchen said, we were all afraid at first. As time goes on and you learn more about ITP, you will begin to relax. Honest, you will.

I will try to answer your questions. First of all, the big one - why do you have ITP? Very few of us ever found out the actual cause, or more accurately, the trigger. Sometimes it can take an accumulation of things to trigger it. For some people, it's a virus, a medication, an herbal supplement. For some people, it just popped up out of the blue and there wasn't anything they know of that preceeded it. At any rate, you could think of it like an allergy; your body doesn't like it's own platelets and reacts by producing antibodies to get rid of them. Sort of like a person who is allergic to pollen and reacts by sneezing. That is a very simple explanation, but one that a person can grasp. In time, you will learn more details that will make sense.

All of the treatments, including Rituxan and splenectomy, are just that; treatments. There is no cure. There are remissions and those can last weeks, months, years or a lifetime. Everyone reacts differently and remissions are different lengths for all of us. I had Rituxan in 2003 and was treatment-free for 13 months. I had Rituxan again in 2004 and have not had to treat since. I never thought I'd have a remission like this. I was diagnosed in 1998 and fought low counts on and off for years, mostly with Prednisone. Most people attain some type of remission and if not, they at least find a way to treat ITP and maintain safe counts (over 30) without too much disruption in their lives. It can take some time to get to that point though, so patience is key. Sometimes, the goal is to keep safe counts, not normal counts, although that is what everyone strives for in the beginning.

Very few people ever die from ITP. It's important to know that low counts do not mean that you will die. People with ITP tend to have large platelets that work well, and they also tend to have more tiny platelet fragments that help clotting also. Those are not counted when you have a CBC.

As for Rituxan, it is not a treatment to be taken lightly, but it can work well and most people do just fine. I got through the infusions with no problems and did work the next day. I did have a serum sickness reaction (rare) three weeks after the first infusion, but if I wouldn't have had that, it would have been smooth sailing.

You'll be okay. Read as much as you can, but be careful of which sites you visit. Some have outdated information and some are just not credible and full of incorrect information. The PDSA is about as accurate as it gets, as well as www.bloodjournal.org

I also had Rituxan, all went fairly well. Had initial allergic reaction with the first infusion. It happened about 3x times, but only on the first infusion. (They stopped and gave me more benedryl, waited awhile for the symptoms to go away and restarted the infusion, each time) With the other 3 infusions, no adverse reactions.
Regretfully the Rituxan doesn't appear to have worked. It's been about 8 weeks now and I find it interesting that you say it could take up to 12 weeks. My doctor only told me 4 weeks. I hope you are right. My hemo wants me to take promacta now or spleenectomy - neither of which I care to do, but I really need and want to get off of prednisone. Do you still have a spleen?

GinaH
SF Bay Area

My post was in reply to "server" and a bit of info for Sandra. Sandra, I was freaking out before the first infusion too, and guess what? It wasn't bad at all. Just wished it had worked.

Gina - yes, it can take up to 12 weeks. Some people are slow responders. I've seen it many times.