Rituxan- the good the bad the positive...any one?

Hi all,

Getting ready to go off of Promacta and taper off of prednisone. Going to get a IVIG treatment next Wednesday and then the next week my first Rituxan treatment..which really freaks me out. I have had ITP for over 21 years. Never have had Rituxan. But I'm thinking it's time to give it a shot.

My counts hold steady right now on high doses of drugs but as soon as the taper gets down I tank into the 1000 and bleed. I've actually had bleeds now with a count of 49K which is unusually for me..I'm thinking it may have something to do the Promacta dosing..just not sure.

This is a huge leap of faith for me..and a second opinion from a UVA doctor familar with ITP. Any helpful hints, things to drink..things not to drink..success stories. side effects to look for would be greatfully appreciated.

I hope everyone is feeling their best

DJ:

After observing people here using Rituxan since around 2001, I can tell you that most people tolerate it well and are usually surprised by that. When you look at the possible side effects, it seems intimidating, but few people have problems. Most people who do have bad side effects already have other health issues that contribute, or they are immunosuppressed due to other medications. Most reactions, if they occur, will happen during the first infusion. Some people experience a problem with blood pressure or heart rate, and if that happens, they slow the drip and possibly give additional meds like Benedryl (which is also used as a pre-med). That generally works and the infusion goes on.

Most people find it uneventful. Because of the pre-meds, most people sleep through it or feel really drowsy. I took a book but kept reading the same sentence over and over. I was fine for work the following day.

Some people might get a fever later in the day. I did, but only one time (out of five infusions). I took some Tylenol and was okay.

A few people, including me, got serum sickness from Rituxan. You'll know if you get it. It hit in the middle of the night and always happens 14 to 21 days after the first infusion. The 19th to 21st day is most common. The symptoms are extremely painful joints, fever, headache, possibly hives, malaise and maybe a red circle around the infusion site. It resolves in 5 to 7 days but is a horrible experience. I basically woke up unable to move. I had it twice because I was misdiagnosed the first time. It is commonly misdiagnosed as a virus.

The success rate for Rituxan is around 60%. Some people only get a partial remission, some do not respond at all. It normally doesn't begin to work until 4 to 12 weeks after the first infusion. It can last 9 to 12 months, but some have had a longer remission.

I had my rituxan in 2011 with no issues during any of the infusions. I got a response right at the first dose. I've been in remission since.

DJM,
I had Rituxan, four treatments, no issues at all. They did the first one really slow with lots of benedryl and I slept through it. Each one was progressively faster. Was at work the next day each time. Unfortunately, I had no response. Wishing you a positive outcome!
Emily

Thank you all for the feedback. I've read to much about it over the years and I have just totally freaked myself out on this drug.

I'm praying this is the right thing to do Emily I hope I respond you and I seem to have a lot of the same response to the drugs we take. Fingers crossed.

Have a amazing day!

Hi:

I had Rituxan in January 2012, and I was in remission by April 2012 -- and have been ever since. I was diagnosed with ITP in August of 2011, but reflecting back, had been dealing with extremely low platelet counts for at least 6 - 8 months prior to that.

I had a reaction during my first infusion, but it wasn't a big deal. An extremely itchy feeling began at the top of my head and started moving down my body. The infusion was stopped for about 30 minutes, and I was given another dose of benadryl. When the infusion resumed, it was at a slower rate. I never had another issue. I had a similar day of experience as Sandy -- I had planned to read and watch Netflix, but I spent most of each treatment napping due to the Benadryl. I heard about the possibility of serum sickness, but I never experienced that.

My counts did not start increasing until 3 - 4 weeks after the first infusion. They got all the way up to about 450,000 and stayed there for a few months. After that, they slowly started falling to around 175,000 - 200,000. I've maintained that range for about two years now, which I credit to the Rituxan.

I had a really rough go of previous treatments -- mainly the steroids -- where I experienced nearly every negative side effect that one can experience while seeing no real increase in my platelet count. I went into the Rituxan treatment expecting similar things to happen, and I was surprised and relieved when my experience was completely different. It changed things for me, and I hope you have a similar experience! Good luck!

Hi DJM
I have had ITP for almost 10 years. After trying prednisone, and IVIG my Dr wanted me to try Rituxan. I was scared about all of the website reports and told him no. But I got bored going to the hospital when ever my platelets went below 6k and I gave in. I had some trouble with the infusion, but going slow with the drip worked for me. My first remission lasted 4.5 years. When I started getting symptoms I again got Rituxan. That remission lasted 3.5 years. Last November my platelets again crashed, but this time I was going out of the country for an extended period. Since I was leaving a week after my crash, I decided to do prednisone instead. (I have never had much luck with getting my platelets up on prednisone, but this time it worked.)

Now, 10 months later I am seeing some bruises. I am thinking I am going to try the "Reset your immune system with a 3 day fast" idea. Apparently you have to do it once a month for 6 months. That's what the researcher emailed to someone who inquired. I have gone through a 48 hour fast, and it wasn't particularly difficult. I guess I should have my platelets checked and watch my progress or lack of. I am not particularly worried. Generally I have a few months from the first time I see bruises to where I need to be treated. I will do Rituxan if I have to. Sorry I am rambling! :whistle:

When I got Rituxan my platelets went up after a three or four weeks from the first infusion. I have heard that is a sign that you will have a long remission. Around the 3rd week I always got "flue-like" symptoms that lasted 24 hours. I have been told that might be due to the B cells dying off.

Hope it works for you!

Thanks everyone for sharing your stories. It really does help. I'm at my wits end with this right now. Just not sure why after 21 years this mess is so bad.

I'm praying the Rituxan is my answer.. I'll keep you all posted. Going Wednesday for the IVIG coming off of Promacta...and starting my taper down from 50 mg of prednisone. I can not WAIT to get my cheek bones back in my face!

Have a great weekend.

How did Rituxan work for you? My wife had it 4 yrs ago and has been in remission ever since. She is happy to be off prednisone.

My count today is 20K it was in the 100's last week. So not sure if it's going to work..but still holding out hope

Congratulations on your wife's remission..that is awesome!

DJ, It is still early; you have plenty of reason to remain hopeful!

I agree. Sometimes those counts shoot up when you least expect it.

I'm going to meet with a surgeon on November 10th just in case the count doesn't get better. I will get the spleen tissue that has regenerated taken out before the end of 2015, I have a huge insurance deductible 20,000.00 that I have met this year. I just can't go into 2016 not erasing all the options that might be causing this to flair up from my body..

If it doesn't go back into remission with all of this...I know it must have something to do with me being Chemically sensitive and moving to a house on the golf course. So selling my house in the spring will be my next step..and praying for a remission. Drastic sounding I know...but I have never in my 21 years of ITP had to deal with it this badly.

It wouldn't be so bad..but I actively bleed with a low count NOW...never bleed out like this before. My count drops so quick with no real warning until I'm bleeding internally. I can't honestly continue to live like this...I go to work feeling fine..go to the bathroom and bleed..and head to the hospital for a count...to find its 2K...Pick my 4 year old grandson up and go to the store and get a bleed in my eye...twice..I'm just over it.

Working on diet changes going to try a more plant based diet. Only putting food and drink into my body that provide some nutritional needs. No more fast food...

That totally stinks. I hope you figure out some way to get some relief.

DJ:

You might have some other sort of clotting problem going on. Have they done a PTT on you or any other testing?