Rituxan - pros & cons please

Hi all

So after my ivig "failed" or "ran out" I've had a phone call from my haematologist. He wants to try rituxan next and has booked me in on Monday to talk to him about it.

I've had a look down this forum and read some of the stories out there - this forum is great for finding out how others have got on so thanks to all those whose info I've read.

I just wondered if anyone has refused rituxan & why? If you have had it, why did you go for it? Is there anything I could ask/consider before deciding if this is the next step for me? Any stories, thoughts, ideas etc would be very much appreciated! Thanks in advance!!

Kat:

I think the main reason why people go for Rituxan is because it can induce remission. IVIG is almost always pretty temporary and although Prednisone can cause remission, it doesn't work that way for most. It also has less side effects than steroids for most people. Most side effects, if there are any at all, occur during the infusion and can be controlled. Some people might feel flu-like for a day or so. I didn't- I felt great the day after the infusion, probably due to the pre-meds.

I first had Rituxan in 2003. At that point, I'd tried Win-Rho a few times with no rise in counts, had tried Danazol but was allergic, and had been on Prednisone countless times on and off for 8 years. The TPO's were not yet available, so the only thing left was IVIG or splenectomy. I didn't even want to try IVIG - I felt it would be a waste of time and I was trying not to miss any work. I could have continued with Prednisone, but that was really interfering with my ability to function coherently at work and deal with my three children. Splenectomy has always been a NO for me, didn't even want to discuss that.

So, I figured that even though I'd miss 4 days of work having Rituxan, I would be a better mother and employee if I wasn't on Prednisone for months, again. My reason in a nutshell.

It did work great for me. Counts responded by week 4; I'd gone from 3k to 150k. I didn't have to treat for another 13 months. However, I did develop serum sickness right after the third infusion. That is a delayed hypersensitivity reaction, and going through it was awful. I was actually misdiagnosed with a virus by an ER doctor, and as a result, had Rituxan again the following year, which resulted in serum sickness again. I should have never had it the second time - the reaction was even worse. This is a rare reaction though, so although it should be considered, I wouldn't let it stop me if I were you.

Most people get through the infusions just fine, sort of like IVIG. Most people also sleep through it because of the pre-meds. As sick as this sounds, I actually looked forward to it as a day off from a stressful job. I planned to read, but just kept reading the same sentence over and over, so I slept. Non-eventful day.

Rituxan is very popular on this forum because those for whom it has worked are most vociferous. In fact rituximab works for just 40% of people. The other 60% are immunosuppressed for a year with no benefit at all. I refused it.