What can I expect on Rituxan?

I saw my Rheumie today and he told me he wants to start me on Rituxan. I'd never heard of this infusion before. I've had SLE lupus for 9 years and Discoid Lupus for about 3 years. In 2004 I was told I had Lupus Nephritis and my feet were swollen so big! I had to start chemo, Cytoxan, while I was hospitalized because they were afraid if we waited that I'd need dialysis instead. Anyway, I did the Cytoxan, followed by Cellcept and my kidneys were responding great to it! I was on it until last year because I got pregnant and had to stop it. I miscarried but instead of restarting the Cellcept, the doc decided to hold it and see how my kidneys responded. Well. My feet swell up daily. I'm releasing tons of protein in my urine. My kidneys are on the fast track to shutting down. I desperately wanted to start the Cellcept but my body seems to come with an "anything that can go wrong will go wrong" sticker on it. I had the MRSA a few years ago and apparently once you have it, you are treated as if you always have it. Any little infection goes super wrong. The doc said until I'm treated for MRSA yet again, I can't do the Cellcept. So! That's where Rituxan comes in. My nurse explained to me the side effects and the very rare reactions that can occur while the infusion is being processed by the body. It sounds scary but this Rituxan will help my kidneys. I'm scheduled to do the infusions next month. Then in August I'll most likely start the Cellcept. Phew!

So has anyone else done the Rituxan infusions? What should I expect? As I mentioned I did the Cytoxan a few years back. Those infusions were an all day experience where I showed up at 7 am and sat there for hours while the infusion went in. Will this be the same? Or will it be longer or shorter? I'm already a barfy person- I'm nauseous almost daily, has anyone had worse nausea while doing this? I'd appreciate any input on your own experiences. Thanks a bunch and God bless.

9 months ago
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  • Gladys

    I've been taking Cellcept for about a year and some months now(I believe)...you tend to forget sometimes when you take so many. Luckily I am just taking Cellcept and Prednisone(Steroid) now, but before it was a disaster. I've managed to taper down to 4 mg which is a miracle considering when I was first diagnosed I was on like 40 mg.....so I'm thankful and hopefully soon enough I'll off of it! In terms of Rituxan, it has helped me a lot when I was first diagnosed and very sick...and yes It was one if the medications they use to support my kidneys and my immune system. The only thing that terrified my family and I about taking the infusion is because it is such a High Dosage. They had to monitor me a lot when I first stared it and I was not allowed to leave the hospital because of it. My last rituxan was about a year ago and I was able to be a in-patient for the 4-5 hours that it took and then I was able to leave. Some take it every few months, but I only take it when needed. (which is rarely now) It has been a life saver, but at the same time I wouldn't call it the "cure for Lupus." Good luck with whatever you decide and my best advice to you would to try and do research yourself and get a second opinion. I could tell you my experience because of the way my body reacted to it, but I've learned that every Lupus patient will not endure the same experiences. For example, my sister and I both have Lupus, but we take different medication. She has never had to take the Rituxan and she also does not have the same symptoms as me.From my experience, I have been very lucky with my Rheumy and she has been the best doctor I can ask for. We have a great relationship, and she knows me too well. She makes me feel as if I am no different to any other human being, and sometimes when you are feeling down, that is very helpful.

    From my experience, I didn't get any nausea from Rituxan, but I did receive headaches, but considering how much worse it could be, that is nothing. Headaches can also be caused from the Lupus, so that might not necessarily be a side effect from the Rituxan. The first timr you take it, it will take a well because they have to slow the process of the infusion, so that they can monitor the way your body is reacting to it. So it might take up to 6 hours the first time. But after that, it tends to go quicker each time you go, because they already know that your body did not reject it the first time.

    9 months ago

  • Dani

    I don't believe in taking drugs made by profit ridden companies, prescribed by physicians that do not know the cause of the disease, meds that are dropped off in samples by some high paid legal drug pushing "rep" that gives the doc superbowl tickets and the like to push his company's meds- particularly because the drugs most often prescribed do NOT cure the problem. 

    8 months ago

  • Allison

    This is from youtube form the FDA  

    http://www.youtube.com/watch?v=h4B8yRn-AmY

    8 months ago

  • Essie

    I have been on Rituxan for more than a year.  I take it every 4 to 6 months, two treatments two weeks apart.  I go to an oncology center for my infusions.  They draw blood, give me Benadryl and Tylenol by mouth, insert an IV, and run the medicine for about four hours.  I have had no side effects or reactions.  Sometimes I feel tired after the treatments, but I'm not sure if it's the medicine or sitting for the IV so long.  In 17 years with lupus, I have never had an easier medicine to take.  The reactions to the drug can be lessened by beginning it very slowly and giving the premedications with it. 

    What I've noticed over the year and a half of treatment is that I am able to be on a bit less baseline prednisone, I flare much less often, and the flares go away promptly with Rituxan treatment.  Instead of slowly going downhill, I've been able to make some good progress in my overall condition (fatigue, endurance, joint symptoms).  I am traveling more often and tolerating it better. 

    I wish you the best with whatever decision you make. 

    8 months ago

  • Heather

    I have been on rituxan for almost 2 yrs now. i get it every 6 months.  Nothing else worked for me, they were just making me comfortable with major pain meds no treatment was working. I am totally off prednisone and I have a great life now. I still have great limitations but I am alive. I am still not able to work due to the fatigue and because of my heart but i can take care of my children with no help, they were having to take care of me. I was scared to start at the beginning but I new i couldnt get any sicker. I thank God everyday of my life for this drug. And i encourage people who have not had luck with other treatments to try it. I am Happy to be alive!!!!!!!!!!!!!!!!  I have not had a flare since i started this.

    8 months ago

  • Lilykat

    Thank you all so much for your input. I decided to go ahead with the infusion, but it was cancelled because I have a minor infection. I was supposed to do it yesterday. The doctor wants me to be as healthy as possible before I do it. I hate that I catch infections so easily. And I saw the FDA video you posted Allison. Thanks for that. My nurse had already explained it to me but it helped. I was able to ask more questions, and after weighing the pros and cons and all my other options, I think Rituxan will be the best choice right now. Hopefully my infection will be long gone before my next sheduled infusion clinic appointment on the 21st. Again, thank you all!

    8 months ago

  • Lilykat

    I've been through my first RITUXAN infusion and it went very well. I only experienced chills. I actually slept through the whole thing. I am going in tomorrow for my second Rituxan infusion and although it still makes me nervous, I hope that it works to help the kidney involvement go away. My feet are so swollen. I worry about kidney failure. The nurse said every patient reacts differently so they don't know when we'll see signs of improvement, but I pray that it is soon.

    6 months ago

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