Starting Rituxin soon: any advice?

Hi, I've had Lupus for 24 years and have had low platelets for quite some time. My platelet count has dropped in the last 6 months to a year (it's now 24) and my doctors want me to start Rituxan, which I'm doing in about 10 days. I've read the literature from the drug manufacturer, but I'm curious to find out how people who've taken Rituxan feel about taking it. Did it help? Did you have side effects? Do you have any advice for me? Thanks!

Lordy:

I have both Lupus and ITP. I did not have Lupus prior to Rituxan though. Long story.

I'm short on time tonight but can give you the longer version tomorrow if you're interested. For now, I will say that yes, Rituxan helped the ITP but I did have side effects (serum sickness).

Yes, I'd be grateful for anything you want to tell me. Thanks, looking forward to hearing from you!

Rituxin helped my ITP. I have had two treatments. They will probably start the first treatment out slow to see how your body will react. You will receive Benadryl/Tylonol for pretreatment. If you feel anything out of the ordinary during the treatment, tell your Nurse. My first treatment went fine, no reactions, The first treatment of my second round I had a reaction. I thought my mind was playing tricks on me. Symptoms got worse. Tightness in chest, chills, increased heart rate, shortness of breath. Infussion was stopped, Benadryl was given IV. Treatment was started an hour later at a slower rate with no further problems. All treatments have their risks. I am not sure if I will do another Rituxin treatment if counts drop again. Dr. suggested Promacta if treatment is needed again. Response to Rituxin is usually slow and it can take several weeks after last treatment before counts can rise.
Good Luck

Okay - let me start by saying that Rituxan has done great things for a good many people with ITP. Most people have few side effects and do well. It either works or it doesn't and when it does work, people can get remissions of a year or more.

I first had Rituxan in 2003. A few days after my third treatment, I woke up in the middle of the night and couldn't move. Literally. My husband slept on the couch that night for some reason and I actually had to wait until he woke up in the morning to tell him that something was wrong. It wasn't paralysis - I had very swollen joints and felt like every bone was broken. We went to the ER and the doctor diagnosed a virus.

I ended up with a good platelet response - counts over 150. That lasted 13 months and I had to treat again. I chose Rituxan - again. This time, I had the exact same reaction only it happened a few days after the first treatment. Went to the ER - I was diagnosed with serum sickness which was what I had the first time but the ER doctor screwed up. That part makes me angry because I repeatedly told him I was having Rituxan and asked if it could be related. If he'd bothered to look it up, I could have avoided the second reaction.

Anyway, immediately after that, I began to have Lupus symptoms. It took a year, but I was diagnosed with it. I believe that my reaction to Rituxan triggered it, just like any med or illness could. I was fine before that, although I know I probably was predisposed to Lupus. BTW - I have been in ITP remission since that last treatment in 2004, but not sure it was worth it.

The thing is, I have noticed over the years that people with Lupus or people who have Lupus symptoms seem to have worse reactions to Rituxan than those who do not. I know it can be used as a Lupus treatment (although not considered very effective). I have not done any research lately on Lupus/Rituxan/reactions, but it might be worth looking at that again.

That's the story.

Thanks, Sandi. You've given me lots to think about/research. Glad to hear that your ITP is in remission. I'm hoping that the Rituxan will work, because if it doesn't, I may have to have a splenectomy, and I'd rather not do that.

Again, thanks for your insight!

Here's one:

www.mskreport.com/articles.cfm?articleID=1172

www.ncbi.nlm.nih.gov/pubmed/17414540

Hi - I just had my fourth infusion a two weeks ago. They were all quite uneventful, but the first day plan on a full 6 to 8 hours. Bring good reading. The next three infusions took 2 to 3 hours each. I felt fine afterwards and went about my day like normal.

I did get sick between my second and third infusion. Joint pain, very low blood pressure, mild fever, vasculitis on palms and soles. I asked about serum sickness, and my hematologist didn't think so; however, I am still not convinced it wasn't. I do not have any elevations or markers for lupus, FYI. Probably good to just be aware and have a plan if you get it (I think one article Sandy posted cited up to 20% experience this).

Thanks for helping me with the research; I'm sure it would have taken me much, much longer to find those articles. I really appreciate all your help; I feel more comfortable with my situation now that I have some information about it. Thank you, thank you, thank you!

My daughter had a months worth of Rituxin and has been in remission ever since. Has been about 2 years now. It was her last resort before Splenectomy. We are very thankful for it. She has no issues with side effects either. Hopefully it works out well for you.

Thanks. I just had my first infusion Friday: no problems. I remain cautiously optimistic; my last resort is also splenectomy. Thanks for your comment!

I've had Rituxin and it helped me for awhile but when I did the treatment I had different reactions. The first one went fine, the second one I sweated through my cloths, bad headache,I felt like the flu. Went for another treatment and it went fine, then the last treatment I had was in the hospital and I got sick again (flu like ) The doctor stated because it was at different location that I had my treatment, it could of been the manufactor of the Rixuin that made me sick. But good luck with your treatment.

I had Rituxin treatment approximately 20 months ago. My platelet count at the start of my treatment was 2.
I had 4 infusions and had no side effects from the drug at all especially when compared to the side effects I suffered with prednisolone.
I have been clear of ITP since my Rituxin treatment. My platelet count has been around the 250 mark for most of the 20 months.
I therefore cannot recommend Rituxin/Rituximab enough.
All the best with your treatment and fingers crossed.

maeld, DeeDee and JD1: Thank you for your comments and good thoughts, I appreciate your comments. I'm hoping for the best!

Dear Ohlordy,
I am also in the same boat. I will be having my 4th Rituxian on 28th Feb 2012. I understand that the effect of Rituxian may take 4 to 12 weeks to show results. I wish and hope for the best.
God Bless you and you will be perfectly fine.

Regards
Seema Mathew

I'm posting to show yet another occasion that no one ever reacts the same to any treatment! My first 4 doses of Rituxan went fine. A slight reaction with first one, drip stopped, benedryl given, started up again after an hour and the rest went well. No side effects. That lasted appx 7 months. Second round of Rituxan same thing. Slight reaction first time, the rest went well, no side effects. But it did nothing at all for my counts. Though Rituxan isn't classified as a chemo drug in itself, it is used in combination with other drugs for use as chemo for Colon Cancer patients.
Can't wait to hear how it works for you!