First time Rituxican, Questions for all

As I suspected, my hema said Rituxican. I am scared

I start my first treatment in 15 hours.

How many of you had a reaction with your first treatment? If you did, what was it and how bad was it?

I know the platelet increase is slow, what were your counts, if you remember after the 1st, 2nd, 3rd, last?

Did you see any difference in your immune system after treatment? (i.e., easier getting sick, etc.)

Did anyone have no positive response?


Hema said if no response or slow response then spleen coming out.


P.S. counts were 3K this morning. Have been under 5K for one week now. No response after IVIG, N-Plate, and platelet infusion.

Patients who are having Rituxan are monitored carefully, so there's no reason to be afraid. If a reaction begins, they will slow the drip and give more meds to stop the problem.

The only reaction I had during one of the infusions was a scratchy throat that caused a bit of coughing, but I didn't even recognize that as a side effect and never mentioned it. It went away. I did have serum sickness which is a delayed reaction 3 weeks after starting treatments. That is rare.

My counts went like this: First infusion - 8k, Second infusion - 3k, Third infusion - 11k, Fourth infusion - 150k.

No, it didn't affect my immune system at all. I still had my spleen and the rest of my immune system was fine. Rituxan only affects B cells and T cells (lymphocytes), which are one of the 5 white cells.

Good luck! I hope it works for you.

Tgurin
I remember the first time I was waiting, counting down the hours til I had Rituxan. It was pretty scary. The first one was done in the hospital which added to the anxiety. But my nurse was great, I was watched carefully. She told me that Rituxan would bring my platelets up. She said she knew many ITP success stories with Rituxan. That was in 2006. I only had my Nitendo DS and a book to keep me occupied back then. My throat got scratchy and I coughed. The nurse immediately slowed down the infusion and everything was fine. The next week my platelets had already risen! I had no lowered immunity due to the Rituxan over the course of my remission. My counts were in the normal range within a couple of months although they fluctuated for a bit.

I got a 4.5 year remission and treated again with Rituxan last summer. This time I brought a netbook. It was great that the room had WIFI and I could watch movies during the infusion. Bring lunch or a snack in case you get hungry. And bring water, the bendryl makes you thirsty. And ask for a warm blanket if you are cold. They have a special heater with blankets just for that purpose. (At least my clinic does!)

If you want to read my long boring story, you can do a search for the topic: Repeating Rituxan after remission Since I had WIFI I could write my experiences there in the infusion room and post it to PDSA.

Everything will be fine for you. Hope you get good results!

Well, I'm home.

I started off at a slow drip with just tylenol and benadryl. Things were fine for two hours, then they slowly started to increase. First, scrathcy throat. Nurse said benadryl side effect. Then, dizzy, said nervousness. Then hot feeling, but skin not hot, nausea. Nurse said nervousness. Insisted I had to go to the bathroom. Came back and goosebumps all over my body, teeth chattering. Called doc, stopped drip. Panicked at this point. Pushed steroids, "something to make the chills stop" and dramazol?. Restarted an hour later, briefly talked to doc (though I was so knocked out and scared I barely remembered), and increased rapidly and ended four hours later. They said they will will start with the steroids next time. Dr. said I should expect fever (I do have a slight one) and chills (none) yet, tonight.

Terrified that I won't be able to do the last three infusions or that reaction will lead to serum sickness.

Usually the first infusion is the worst. They get easier. Most of the people who have a reaction the first time do not have any problems for the next three. Calm down - it's okay. You did the hard one.

A reaction like that has nothing to do with serum sickness. Serum sickness is an allergic reaction to the mouse gene used in Rituxan. It's always a delayed allergic response.

Thanks for helping me through this.

♪♫ That's what friends are for! ♫♪♪

Try to Relax. You will get through it just fine. It took 16hrs for my first treatment that was supposed to start at 8am. The first few hours were due to not being prepared. The treatment was started slow to see how I would tolerate it. I believe I finially went home around 10pm. The next three aproximatly 7-8hrs. I had a reaction during the first treatment of my second round of Rituxan. I started feeling chills, shortness of breath, shaking and tightness in chest. At first I kind of ignored it, but it was not getting better so I mentioned to my Nurse. Treatment was stopped and meds given to counteract reaction. Treatment was started an hour later at a much slower rate. The last three went fine. Going on three years of remission with counts averaging 170-215k. I was slow to respond. Counts would rise a little, then drop, rise and drop. Not much of a response during treatment and a slow response weeks after. I was scared at first wondering what this drug could do flowing through my body. A normal fear. So, do not get discouraged if counts do not respond right away. ITP is a "Rollercoaster" ride. Many ups and downs.
Stay positive!!

Try not to stress out to much I did 8 treatment plus 2 vanchristin and after the first treatment it wasn't that bad.For me the worst side effect was how tired I was but went away about 3 weeks after the treatment was over. For me rituxican did not work my counts stay around 30 to 40 some times higher or lower all depends on how much predison I am on. I will say take a phone or book to keep you busy it does take a long time to take the treatments.

I read that too fast and thought you said to take a "phone book to keep you busy". I wondered why you'd think that was adequate to occupy time! :woohoo: