rutixan

My hamatology intend to use rutixan to treat ITP for me. Anybody have experience about this medication? Thank. Does it work well?

I had Rituxan a few months ago. 10years ago I had a splenectomy and had a 10y remission. Pred didn't accomplish anything 10years ago nor recently but make me irritable so I accepted Rituxan. I pre-treated with Tylenol and Benedryl and the infusions went easily - in fact I slept through 2+ hours of it due to the Benedryl. I did have a minor throat reaction during the 2nd infusion but it wasn't much more than it feeling a little funny. However I was rather abnormal in that it was 9 weeks before my counts started climbing - that was a long 9 weeks and my MD and I had basically given up. It's now 2+ months later and finally in the past few weeks I seems to have settled into the 240's

I'll be honest...the potential side affect scared the devil out of me but I eventually rationalized the low incident of side effects vs 0 platelets and accepted the Rituxan.

Since Rituxan isn't typically the first treatment choice, I assume you've exhausted the various other treatments (anti-d, prednisone ...)? What are you counts and how long have you been dealing with ITP?

I wish you well as you consider this Rx.

I am also tryin rituxan currently and still waitin to see results.. i finished my last dose (4th injection) on 27th of Dec and am gettin my counts done today so fingers crossed. As of 27th there was no change in counts.

@steve- i knw diff ppl respond diff to rituxi but u responded 9 weeks aftr the 1st injection or 4th injection??

I am currently in my 2nd round of Rituxan. The first 4 treatments kept my counts in a safe range for a little over 6 months. Also had a slight reaction during 1st treatment both times, but nothing big. Hoping this time it will bring my counts up higher for a longer period of time! and I hope it does the same for you!

I'm currently in remission from my second round of Rituxan. The first 4 treatments kept me in a safe range for 9 months. The second time I only had two treatments (that was the plan I'd talked my dr. into) and I had a reaction to the second one during the infusion and that was followed by severe head to toe hives after I got home from the treatment. I can't use Rituxan again. But I've had 2.5 years of remission so far with counts mostly over 200.
Erica

I don't seem to be able to move this thread. Otherwise, I would.

7 weeks from first infusion and I showed small gains (+15, +20). During week 9 I was hospitalized with pneumonia and daily CBC's went from 83 to 344 (over 10 days).

I am new to this whole thing and I am actually not the one dealing with ITP. My 20 year old daughter, in her third year of college was just diagnosed last October. She has been on prenisone since that time, and has been in the 80-100 range. Her hematologist wanted to get her off the prenisone and start rituxan. She had the first infusion on Jan. 3rd. She got a little rash on her face, and slept through half of the treatment. She has been running a low grade temp since that day and is feeling very tired and her joints are very achy. She is currently down to taking 20 mg of prednisone, then will start with 10mg next week. Is it normal to feel achy and so tired? I was under the impression, that she could just go back to living on the day after treatment?? She has not gone back to college and she is down to only working one day each week. Anyone have any advice, experience or suggestions for us?

A few people have reported feeling achy like that after Rituxan. What pre-meds is she having? I had Solumedrol and felt fine after the infusions. She might be feeling tired and achy due to tapering Prednisone. That's normal.

Most people do sleep during the infusions because of Benedryl.

She gets tylenol and benadryl before the infusion. What is the Solumedrol for? Not sure if that is for pain?

Hello, and welcome to the boards. We're here for ya!
The benadryl makes me sleep through the whole treatment! I enjoy my weekly 3+hour naps! And like Sandi said, the pain may be from the prednisone taper. My taper was the worst time of my life! The taper, for me, was worse than being on the silly medicine. Then pain and emotional roller coaster was crazy. Wouldn't hurt to ask the doc about it though. The basic rule involving ITP......everyone is different!

if we need to choose b/w N-plates and Rurixan, which one do you prefer? I read the side effects of N-plates which make me affraid not wanting to use it.

You should really read the side effects of both and decide for yourself. Rituxan can have some really nasty side effects too. Personally when I had the choice myself in the past I still went with the rituxan, but there were so many factors that went into that decision for me. One of my main deciding factors (other than medical issues, side effects, etc) that went into my decision was rituxan is ~every 6 months where nplate is weekly... lots of factors to consider.

I've done both of them. I can only share my story, the decision is up to her.
NPlate. It did the trick, real well! It brought me up as high as 377. That's good, but such an influx of new sticky platelets can have it's own problems (clotting). The joint and muscle pain wasn't worth it for me. I wouldn't go back to NPlate for anything.
Rituxan. I've had 2 rounds of it, in fact just finished my 2nd round today. I had a slight reaction to the 1st infusion each time. Nothing big, itchy roof of mouth and throat felt sore and swollen. They stopped the infusion and gave me some steriods and started again in a bit. No other side effects. The first roundkept my counts in a safe range, 30-97 for 6+ months. This second one hasn't shown any change yet. I've been at 28 or 29 for a month now. We'll see what happens because it can take up to 12 weeks to work at all.
Do all the research you can!

Solumedrol is given to hinder infusion reactions. It's a steroid.

Its been 6 weeks since my first rituxi infusion and as of last week there was no change in counts. When i started rituxi my counts were at 2, they went to 7 and then again fell to 2 on my last dose. As of last week they were still at 7 but my doc says that we still have to wait and watch.

Basically i wanted to check as to how long people generally wait till they know rituxi has failed. I am also on prednisone(10mg/day) and danazol. Nothin worked so far and i still have to try IvIg and Nplate. My doc brought up the option of spleenectomy but i am not too sure i want to do that.Any suggestions??

Any suggestions??

Have you considered Promacta? Doesn't work for everyone, but it has kept me in the 50k range for most of the past year (after several other treatments have stopped being effective). It is similar to Nplate in what it is designed to do....but it is in pill form.
I'm one of those who will exhaust the alternatives before considering spleen removal. My spleen and I have become quite attached to one another over the past 57 years, I'm in no rush to say goodbye to it.

Madrid:

I'd say give it at least 12 weeks. We've even seen some responses after that. By 12 weeks though I would consider it a failure and move on.

Hi Madrid,

My husband also finished his 4th Rituxan on 27/Dec/2010, counts still hanging around 2k & 3k, last week was 2k. Dr reduced Prednisolone from 10mg/day to 5mg/day, but added Dapsone 100mg/day. We will wait and watch till 12weeks.

Dr always mention about splenectomy, but we are not keen. One Hema from another hospital told me that those failed to IVIG, the chances for platelets incresing after splenectomy is very low, true? Anyone have more info about it?

Please advise. Thank you.

yean

Well i went back to the doc today and my counts are still at 6k. It has been 6 and a half weeks now and the doc is not too hopefull, he says that we can wait till 8 weeks but since i havent shown any sort of response till now he highly doubts it will work. I have tried out most of the other treatment options (predi, dapsone, danazol, dexa pulse) and none have worked till now.

So the doc has suggested 2 options right now- one is spleenectomy and the other is a clinical trial, which is a new variant of IvIg which they want to try on chronic ITP patients. He wants me to take a decision in the next few days so that he can prescribe medicine accordingly. I am leaning towards the clinical trial cause am not too keen on a spleenectomy. Any advice would be appreciated cause my parents and me are still tryin to figure our way out of it and the past 6 months, since i have been diagnosed have been taking a toll on them as well.

@Yann: i too finished my last dose on the 27/12/2010

He has also suggested Cyclosporine but he said that it a bit more toxic so a spleenectomy is a better idea. Also how what are the likely changed to occur after you get ur spleen removed?? As in any life style changes or side effects??

Husband's count is 1k today I really feel tired, how to be positive thinking? We discuss with Dr, and he will let us wait till 12 weeks. He proposed to check the bone marrow again since last done was June 2010, will arrange it in March this year if no respond to Rituximab. We requested a blood film check today, result still pending.

He did try a few other treatments : IV Methylprednisolone, Imuran, Danazol, IV Dexa, IVIG (48 bottles), Azathioprine, Dapsone but no response..

If....no respond to Rituximab, what should be next????

Happy New Year Everyone!

I haven't been on this page for awhile, as I use FaceBook and there is a page called ITP people so that's where I am most of the time.

I just wanted to share with all of you that I have finished 8 Treatments of Rituxan. I had 7 of them in Connecticut and #8 down in Florida. The only thing I can add is to tell you before you get the IV, the nurse will give you liquid Benadryl and 2 exta strength tylenol, just in case you might get a reaction. My reaction was feeling cold from the benadryl and then you feel sleepy from it too.

My last treatment was here in Florida in December 2010. I came back to Connecticut in December and went for a CBC test. My Platelets went out to 165,000. I went in January 2011 for another CBC test and my platelets went up again to 189,000. My Hematologist was pleased and told me I have a 50-50 chances of the Platelets staying up. I am now in Florida for the winter months and I will be going for another CBC test in February. I feel very positive that the Rituxan is working for me. You need to focus and have a good attitude. There are many stories of different people's reaction from the Rituxan. There are many drugs out there that can be tried before your Hematologist will give you a splenectomy. That is a last resort! People who have had a splecnectomy is still have problems. I believe that every part of our body was put there for a reason. I believe in my Hematologist. Remember, if your not satisfied, you can always get a Second opinion.

Good luck and God Bless! My prayers are with you!

AmeliaP/CT-FL

Rituxan kept me in the 90s, with a few ups and downs, but not near 50K. 20 month remission. But, immunologist says that I had serum sickness. Near beginning of treatment (maybe within a day) I got hives all over my body, torso, legs. I thought it was from something I ate. But, the symptoms happened about 6 hours after I ate. So, immunologist says that was not it. Symptoms and timeline fit with serum sickness from Rituxan, he says. Did not know about this until after all 4 treatments. Saw the immunologist about 6 weeks after first treatment date (so 2 weeks after treatment was complete). Serum sickness is supposed to be rare. I also had to take Decadron for the tightness and trouble breathing during first treatment. Hope that helps....not sure if I would do it again. My platelets since have been super low, 4, and we went back to steroids. I am currently finishing 4 week taper. so far, so good!

That doesn't sound like serum sickness. I've had it twice from Rituxan and the time line is usually 2 to 4 weeks after the first infusion. Hives are common, but so is disabling joint pain, fever, headache, etc. The few of us who have had it were unable to move.

There have been a few people who had hives from Rituxan and that was basically an allergic reaction. Did you have the other three treatments after that?

www.nlm.nih.gov/medlineplus/ency/article/000820.htm

That is a good site for serum sickness Sandi.

I had every symptom except rash - and I thought I would never walk again without pain, it was horrible! Mine was caused by amoxicillin and I cannot have penicillin again - neither can a friend for the same reason.

I wonder about just hives being serum sickness - I would tend to think an allergic reaction to rituxan [but doctor I am not].

Madridista wrote: He has also suggested Cyclosporine but he said that it a bit more toxic so a spleenectomy is a better idea. Also how what are the likely changed to occur after you get ur spleen removed?? As in any life style changes or side effects??

I had cyclosporine for a while and i do agree it was very toxic and i had a lot of really bad side effects and i WILL NEVER have it again. It is a chemo drug, so thats why it is so toxic.