Does anyone have experience with Rituxan or Remicade for RA?

@pm56
In some cases, like mine, there is not shortening the schedule because it is not covered by Medicare.
I had a limit of an infusion once every 8 weeks. That was it. When Remicade stopped helping my symptoms, I switched to Simponi. Also once every 8 weeks.

I tried methotrexate and had disabling depression so my next option was Remicade. I have to have an infusion because Medicare D won't pay for the medication unless it's given as an infusion.

I had very good results from Remicade for 3 years. Then I was having worse pain, inflammation, fatigue. So I've been on Simponi for 12 years. It has been worth the trip to the Infusion Center every 8 weeks because I've had no progression of RA illness. I am very

Two things I would advise anyone before an infusion: Hydrate the day before, the day of your infusion and the day after. By doing this I avoid a headache I used to get after my infusion. I might be tired a day or two after the infusion, but then my energy will pick up for another 6 weeks. And the cycle repeats!

@jw9 Understood. I’m 57, so I’m not using the Medicare system just yet. I know when my doctor comes up against hurdles, she often appeals. Is that an option with Medicare? Can a doctor ever appeal certain Medicare limits successfully?

I’m curious, as I’m not that far away from entering that system, and my medical needs lately have been great.

Rituximab has 3 approved biosimilars:

Truxima by Celltrion; Ruxience by Pfizer; Riabni by Amgen.

Anyone with comparative experience of using these drugs? Efficacy, your response, if there was any toxicity?

Please share your experience.

@pm56
I've actually been on Medicare since I was 31 because of all this autoimmune illness disability. In my experience, there has been no "give." I feel I have excellent care, even while my doctors don't go up against Medicare guidelines. I am grateful to have had this ever since I lost my career as an RN at such a young age.

I'm doing fairly well too all these years and coping!

@jw9 that's good to hear. Wishing you continued success with treatment 🙂

@altabiznet I’m on Ruxience as my insurance company wouldn’t approve the Rituxan. So far so good.

I’ve actually been on both. Rituxan didn’t do anything for me, and from what I remember you usually have to wait about 6 months before switching to another biologic.
I was on Remicade for almost 15 years. Over time I ended up developing polymyositis and had to start IVIG, which is what led me to Mayo Clinic. While I was there, they told me I likely never had ankylosing spondylitis in the first place (which is why I was originally put on a biologic). They also said my polymyositis was probably medication-induced, which I had barely ever heard of happening.
Since they didn’t really give me a new treatment plan, I went through my labs and chart notes (I used to work in the medical field) and saw that I had developed antibodies to Remicade. From my understanding, that basically means the medication isn’t effective anymore because your body is neutralizing it. After discussing everything and not having a clear plan forward, I made the decision to stop infliximab.
After stopping it, I actually went into remission for about 2 years. Then I went through a couple of major life stressors, and everything came back hard—it felt just like the polymyositis all over again.
I found a new rheumatologist who wanted to start completely from scratch. After repeating all the testing, I was just diagnosed with an overlap syndrome involving polymyositis. We were hoping stopping the drug might have reversed things, but that didn’t happen.
On top of that, I was also diagnosed with probable medication-induced lupus (likely from Remicade), and psoriatic arthritis—which didn’t surprise me since I’ve had psoriasis for years.
I know my situation is pretty rare, and most people don’t have this kind of experience with Remicade. I’m just sharing so you’re aware of what can happen, even if it’s uncommon.
Definitely make sure you understand the risks and side effects before starting, and talk everything through with your provider. Wishing you all the best!

@dani007

Thank you for sharing. How did IVIG work for you? How many infusions did you have, and did it improve your symptoms of polymyositis?

@altabiznet
I have been on most everything including rinvoq and rituxan saved me because I was running out of meds to try. I have had ra for 30 years. Rituxan takes a 3 months to work but it did and I have no noticable side effects.