Skip to Accessibility Tools Skip to Content Skip to Footer

Forums


General Discussion

Rituximab / Rituxan

  • By LemonThyme

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

    reply
  • By Lawrence 'rick' Phillips Moderator

    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

    reply
    • By LemonThyme

      Rick, thanks for your timely reply to my post about Rituxan. My concerns about potential side effects were aroused because of some specific parallels to my own health history.

      For examples, the Rituxan information sheet advises to “tell your doctor” of 1. any history of kidney disease (I have no kidney disease but I was born with only one, and I’m careful about it); 2. heart disease or heart rhythm disorder (I had a heart attack 30 years ago, and subsequently had a stent and an ICD installed). The ICD has never fired, I’m not paced, and I always do okay on the biennial treadmill test.

      Still…

      Reading online of some studies of patients on Rituxan, I saw some incidence of cardiac problems. Of course my rheumatologist knows my history, and has consulted with my cardiologist. Still, I appreciate getting insights from people who have direct experience as patients on Rituxan.

      Over my 40+ years with RA I’ve been through high-aspirin dosage, prednisone, gold salts, Plaquenil, methotrexate, Enbrel, Orencia (infusion), and several kinds of anti-inflammatory pills.

      I expect to proceed with Rituxan within a few weeks, perhaps shrinking my “to read” pile of books during hours of infusion. I’ll report back here on how it goes.

      Again, thank you for your positive information on your experience with Rituxan.

      reply
    • By Lawrence 'rick' Phillips Moderator

      Hi, sorry I misunderstood the question. I have used Rituxan successfully for over 6 years now. I refused to take it when my doctor suggested it for many of the same reasons you cite. I have type 1 diabetes, in 2006 I had open heart surgery and in 2013 I had stents inserted. So while I have both kidneys, I am also very cautious of kidney disease.

      All I can say is that once I decide to have the medication I was never disappointed.

      Now, it is not 100% smooth sailing. I usually have leg pain during the infusion. The pain is sufficient that my doctor prescribed a mild sedative so I sleep thru the administration of the medication. With all Infusion’s I have had, I get ill, and that illness is taken care of using using Zofran. A friend of mine who uses Rituxan has post infusion joint pain. This passes, but it is difficult.

      Finally the infusion includes a liberal dose of Solu-Medrol which may account for the post infusion joint pain. In my case it certainly causes my blood sugar to soar for about 36 hours. It requires a generous amount of insulin to get my blood sugar under control.

      None of that keeps me from taking the medication. I notice my pain drastically improves a few days after the second infusion. It is well worth the short term issues i have during the infusion to get the massive relief that I get. Rituxan has been a great mediation for me. I hope it is for you as wel.

      reply
    • By LemonThyme

      Rick, thanks for the additional details.

      My situation requires about 2 hours commute to the hospital for infusion. I go there by ferry, combined with either driving, or riding a bus at both ends of the ferry ride. The bus choice requires some extra walking to make connections.

      Usually I walk around okay, unless having a flareup and need a cane. Then I’m pretty slow.

      I hope that after an infusion I could walk and/or drive myself home.

      reply
    • By Lawrence 'rick' Phillips Moderator

      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.

      reply
    • By LemonThyme

      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.

      reply
  • By campbell351

    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.

    reply
    • By LemonThyme

      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.

      reply
  • By Piano14

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

    reply
    • By Lawrence 'rick' Phillips Moderator

      So with me, I lost 90% of my hair long before RA so I cannot address this. However I do not know anyone who has spoken of the issue.

      For fatigue I can say post infusion and for about 1 week I find it is worse. However over the course of the four month period pst infusion, for me it’s gets so much better.

      This is a double infusion done 2 weeks apart so I tend to porpoise up, then down then back up

      However to be fair I cannot judge how much that is the greatly increasing blood sugar or the medicine in general.

      reply
    • By Piano14

      Thanks for the feedback. I know about the porpoising up and down effect. I had that same thing happen to me when I took the weekly injections of Enbrel and later when I used Humira. The fatigue hit me really hard. That energy flux is really hard to live with because every day becomes even more unpredictable than the normal fatigue. I fear the infusion will just put me in a coma state for half of my waking hours.

      reply
    • By LemonThyme

      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.

      reply
    • By Piano14

      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.

      reply
  • By LemonThyme

    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.

    reply
  • By prohlfes

    I would like to get the latest updates from the people taking Rituxian? My Doctor has suggested I try it since the xeljanz has not been able to reduce the swelling I have in my hands and feet. Any input would be greatly appreciated.

    reply
  • By Lawrence 'rick' Phillips Moderator

    I have used Rituxan for five years and I have found it to be a great medication for me. Rituxan is the 6th biologic I have used and I have used it the second longest.

    I am happy to use the medication.

    reply
    • By prohlfes

      Thank you for the reply. It’s nice to here that it’s working for you. Have you experienced many side effects?

      reply
    • By LemonThyme

      I had the first infusion on July 22, and the second one on August 6. I haven’t noticed any side effects. Improvement in those joints which have usually been problematic for me was not noticeable until mid-October. I also take daily Plaquenil and Sulfasalazine.

      My rheumatologist has not yet set a date for next infusion. She said that in some cases it can be as long as six months between infusions.

      reply
    • By prohlfes

      Thank you. I am waiting for approval from my insurance now.

      reply