Back to all discussions

Rituximab / Rituxan

My doctor is recommending this infusion for me. I would like to know others' experience with it, especially as to side effects.

  1. Hello LemonThyme, I have used infusion for treatment of RA for most of the last 20 years. I really like the process and in fact usually only agree to have a change in medication if the change allows me to continue to use Infusion.

    You asked about the side effects, but, in reality the side effects are about the same as non infusion therapy using the same medication. the largest difference form my perspective is time. Taking a pill or an injection takes maybe 10 minutes. Where an infusion can last 1 6 hours. In my case I use Rituxan each 4 months. That means the infusion happens in pairs. One infusion is about 5 hours and the second two weeks later is approximately 4 hours.

    I hope that helps, if not please let me knwo and I will see if I can be of further help.

    Best,

    Rick Phillips

    1. I imagine you will be OK, but I do suggest you find an alternative means of transport the first pair of infusions, just in case. If that works without issues I suspect you will be fine.

    2. Hi Rick,

      My first infusion is scheduled for July 22. A week or so before, I'll go over to the clinic and talk to them in person about the procedure and what I might expect. The facility is familiar to me because I had infusions of Orencia there until about a year ago, when the doctor recommended to go off it because of potential conflict with development of another medical situation.

      I'll post about the Rituxan infusion experience, after.

  2. I had Rituxan infusions in February (4 hrs each, 2 weeks apart). Due for another in August. I did not experience any side effects, but I am also sad to say I did not experience any helpful effects either. After some blood tests my doctor just added Leflunomide to the mix (along with Plaquenil and Prednisone), and I have had a little improvement since I started that. One thing that kind of shocked me about Rituxan though was the price. The hospital charge was about $55,000. After insurance my portion ended up being about $5800. It would have been more but that cause me to hit my catastrophic limit for the year. I was not expecting that. I know the company helps people, but only if your health insurance is not funded by the government. So if you are on Medicare or federal employee health insurance or military Tricare they won't help. Which kind of stinks because regardless of where the health insurance comes from, they are still paying premiums, and are still just regular people, trying to get by like everyone else.

    1. campbell351, thanks for the heads-up about potential for problems with insurance coverage. I will go to the hospital clinic a week or so before my Rituxan infusion and try to get information about the billing process and the likely costs to me.

      During my year or so of Orencia infusions at the same hospital facility, all the costs were covered between the combination of Medicare and my group insurance. Hoping it's the same for Rituxan.

  3. Thanks for all this information. My doctor has also suggested Rituxan for me. Is there any hair loss or fatigue?

    1. The porpoising effect is interesting to me. When I took Enbrel (twice weekly injection) and Orencia (infusion every 4 weeks) I didn't experience any unusual fatigue. I felt normal in that regard. Crossed fingers for Rituxan.

    2. Yay, the constant up and downs is what had me switch to the Xeljanz XR to get a smaller, steady daily dose and of medicine in order to eliminate the porpoise effect. It's interesting to me that you didn't have that side effect. It can be brutal. Best of luck to you with Rituxan.

  4. On this Thursday, I'll be at the hospital for a different appointment, but I plan to drop in at the Infusion Department and ask if they have any advice for me, a Rituxan first-timer. Any suggestions for questions for me to ask are warmly welcome.

    or create an account to reply.