Can I get some input on the drug Rituxan?

I would like to know if any if you have taking rituxan and where there any side effects during and after the use of it. When I read about it there seems to be some serious side effects to it.

I did my Rituxan in 2011 with no issues. Counts went up immediately after the first dose. But everyone is different, so just because I didn't have any problems doesn't mean anything.

Hi. I had Rituxan in 2003 ans 2004. There are some very serious side effects to Rituxan, but they are very rare. Most people tolerate the infusions quite well, and patients are closely monitored so that if a reaction starts, it can be quickly stopped. Most of the serious side effects occur after the infusions (weeks), but again, they are rare.

Rituxan is a heavy duty treatment, but has been used by many, many people here with few problems. I'd guess that it works about 50% to 60% of the time to provide an average of 12 months of remission.

I had serum sickness three weeks after my first infusion which resulted in permanent health issues. However, I've observed the experiences of hundreds of others here since 2002 and only a handful have had problems like that.

Do a search for rituxan - there are tabs above this labeled' Index - Recent Topics -New Topic - My Topics - Profile - Search
Click on Search and fill in the boxes - you will find lots of threads

JBaze:

My opinion: I don't think you need to even consider Rituxan right now. You're already on Prednisone and Promacta. Adding a third treatment to that would be crazy. Promacta is usually the treatment that most consider to be the most successful with the least side effects. Most people have to go through a few treatments (Prednisone, Rituxan, etc) before they are even offered Promacta and when they finally get it, they wish they had tried it sooner. It seems to be the drug that stabilizes people and gives them a normal life back.

JBaze
Sandi is a wise woman. You cant know what is working or not until you are on only one medication for a time period. Prednisone can make your counts go up so until that is totally stopped it is impossible to know what is working. I had rituxan but had no rsponse. I am now on promacta and am down to taking it three days a week ata adose of 12.5 mg. i wish that was the first treatment offered!
Good luck
Emily

Emily:

You're doing great! How are your counts? How long has it been since you were diagnosed now?

See? You're not Crazy Emily any more! I knew you'd get there!

I was diagnosed january 13, 2015. I was not sure I was going to get through it! I am sure I would have no spleen or sanity if not for you and the pdsa. I feel awful for those with ITP who do not know about this site. Last count was 86 on 12.5 mg of promacta three times a day. I see the doctor on tuesday for my next blood test. He has been holding me at one dose for a month and then I drop a dose. Platelets drop the first two weeks and then have come back to an acceptable level. I feel very fortunate to have had such a good response to the promacta with no side effects. I did get a letter from my insurance company that now I need to get precertified before they will fill the next presciption so I am a little freaked out but am hopeful they will not deny the prescription.
Thanks for asking and all you wisdom and patience with me! I do not think I would take prednisone again unless I was dying and maybe not even then.

Rituxan works differently for everyone. I've seen a lot of success I tried it three times the first time I lasted twenty minutes and I blew up like a balloon it was stopped second time about 30 minutes and the third I was rushed to the hospital from my Drs office. Not trying to scare you lol but some people do have severe reactions, but don't worry you will be watched like a hawk and make sure if you feel anything say something

Keli it sounds like they should never have given it to you the 2nd and 3rd time.

I'm with the person who says do not try too many treatments at the same time. If one treatment does not work do not continue with it. Be prepared to move to the next treatment but if you are still on treatment #1 and than treatment #2 do not go to #3. (my person opinion)

That said I had Rituxan or Rituximab x2 First time through a drug study double blinded. I knew it was the real drug because I had a reaction with the first dose and nothing with the 2nd, 3rd or 4th. During my first infusion when I had a reaction they just stopped the drip gave me some benadryl and stuff than restarted the drip slower. No problems with the other 3 doses. Gave me a 6 year remission.

2nd time I had it after my second dose I noticed what felt like bug crawling on my legs. During the 3rd dose it started up again. At that point I stopped treatment gave me close to a year in remission. My family doctor said I had to wait 1 year before he would treat the parathesia. So I waited and it is 99.9% gone. Every so often I will notice something but it is so minimal it is not worth bugging the doctor.

Just please remember to look at the whole picture when deciding. Short term effects, long term effects, Interactions with other medications. Go by your numbers and your symptoms combined with your lifestyle. Make sure they have given enough time for a treatment to work. Make sure if the medication is not working that the doctor is willing to take you off of it. Remember some of these new drugs are not meant to bring you into normal range they are just meant to bring up to safe levels.

Most importantly keep doing what your doing ask questions! Research! I came to this site (old forum) years ago. I read up on treatments asked questions. I research so much I knew more about ITP than my last hematologist. Make sure your doctor is the right fit for you! My new hematologist and I can have an actual discussions about what is best for me! She listens to me and remembers.

Remember you are your own advocate and it is ok to question a doctor!

Thanks CindyL

May I ask how your count is now?

Sandi

I have tried everything except the N-plate, rituxan, and two chemo drugs the doctor talked about. I will be seeing the doctor tomorrow to have my count checked and after that I will be looking into another doctor.

EmilyK

Thanks yes I to believe Sandi is a wise woman I have took a lot of her advice to the heart. I do believe my doctor is going to be a little pissed tomorrow because I will be telling him that I will not be trying the rituxan at all and that he needs to start decreasing my prednisone.

Kelirae24


After reading your post all I could do was say WOW WOW WOW yeah that is sceary. How are you doing now?

J, my counts have been normal since the treatment. I haven't had a blood test in a while and probably should go get one.

Jbaze:

I think Promacta is working for you and you need to give it more time. If I remember correctly, your last count was just fine.

Sandi

Yes just left the doctors and my count is at 75. Do you know he has scheduled me for the rituxan in 2 weeks, even after I told him that I am already on 2 meds now. He didn't even try to reduce the promacta just the prednisone now I'm taking 80mgs. So since I don't see him for another 2 weeks I am trying to find another doctor this week.

Your Promacta dose is okay for now. I wouldn't worry about changing that dose. Your counts are perfect, and changing too much at this point might cause a drop. I'm glad he is tapering Prednisone though. 100 mg's is a high dose.

I can't believe he scheduled Rituxan after you told him no. You have the option to not show up. Rituxan at this point would be overkill. I cannot understand why doctors want to put their patients through immunosuppression and toxicity when it is not necessary. It's clear that one of your meds is working.

Good luck with the doctor hunt.

I did Rituxan in Oct 2015. No increase in my count. I had a reaction to the first treatment. They stopped it, gave me more Benadryl, Tylenol, steroids, & something for my sky high BP. I had numbness in one leg for a few days after treatment. I had that after every treatment. Now I have neuropathy in that foot, hip, & joint pain to date.

I have had ITP for 26 years. I was one of the first patients to do radiation on my spleen, to partially damage the spleen rather than to remove it completely. Each radiation therapy I did lasted about 5 years, I did a total of 3. My doctors were concerned about me doing any further treatments because of the side effects of radiation.
Steroids came again, I just hated those, they were horrible for me tolerate, so looking for another way to raise them, I began doing my homework.
My results were Papaya Leaf Extract! Yes! It raise the platelet count naturally. I recently started a new medication that lowed the platelets again, so have begun using the papaya leaf.
I take a half of dropper every morning for about a month then have blood tested, once they are back up to where I want them to be ideally about 140k, I stop dosing. This has been working for me for several years now.
I ordered my extract off EBay about $8 US. Best of luck and God Bless.

May I ask why you want your count at 140K?

tkine WOW is all I can say. I do know that I have decided not to go the rituxan route. Being on this prednisone has cause me to become a diabetic now and I refuse to take anything else that will cause me to have a lasting illness that will not go away. I can say that I am down to 50mg of the prednisone and can't wait to stop it for good.

Did you end up finding another doctor?