Does anyone have experience with Rituxan or Remicade for RA?

Posted by Alta Net @altabiznet, Mar 24 3:02pm

I have tried a couple of medications for my inflammatory arthritis. Methotrexate worked but produced some weakness and dizziness along with skin rashes. Actemra also worked but caused GI cramps. Humira worked as well and was well tolerated. All biologics eventually produce anti-bodies that cause resistance to the drug and therapeutic effect gets diminished as a result.

My next step would be Rituxan or Remicade. Does anyone have experience with these drugs? What kind of responses and side effects?

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pm56 | @pm56 | Jun 24 8:24am

In reply to @dani007 "I’ve actually been on both. Rituxan didn’t do anything for me, and from what I remember..." + (show)

@dani007

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!

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@dani007 I switched from Cosentyx to Remicade and after the loading doses developed myopathy and ataxia. My myomarker panel had always been negative and after the two loading doses of Remicade, I suddenly started testing positive for Tif Gamma dermatomyositis. I did have the shawl sign (redness on my chest associated with DM) prior, but never tested positive until the Remicade. I’ve often wondered if it was induced by the Remicade. Thank you for sharing your story.

annmo | @annmo | Jun 24 12:06pm

Hi!
I've been on both as well as several others (Enbrel, Humira, Methotrexate.)
After being on Remicade for some time, I developed a melanoma on my nose.
Note; the overall effects were not great ; but none have been that successful for me.
As I am overweight, and the Remicade dose is based on weight, I was receiving quite a high dose.

An oncology team and the rheumatologists I was working with said that I could no longer be on the biologics for my RA. As a result, I am now on Remicade as it seems to help somewhat - not a complete "fix" but there are some benefits: somewhat more energy, a little less stiffness.
There have been no significant side effects from the Rituxan - a little weakness after the infusion.
I am also on azathioprine for RA.
It's been my experience that the meds seem to work for maybe 2-4 years, then seem to slow down on their effectiveness.
Best of luck on your journey!

sweetundine | @sweetundine | Jun 25 8:27pm

In reply to @davidtile1 "@altabiznet I have been on most everything including rinvoq and rituxan saved me because I was..." + (show)

@davidtile1

Your situation is very similar to my own. I too am thirty years in and have burned through so many biologics.

I am now trying some supportive medications that are additional to my current biologic for Sero-negative RA, Kevzara. I am now also taking low dose naltrexone (LDN) and a low dose of a glp-1 antagonist, oral wegovy. I have had a major reduction in pain inflammation these last six months while on LDN that might be caused by this additional med. And I am new to wegovy.

From what I understanding, these are emerging treatment support options with some evidence to support their use, but not enough for my insurance to easily cover them. I pay out of pocket for LDN ($35 per month at a compounding pharmacy). My doctor tried for three months through a couple appeals and just earned a preapproval, but I think using other medical criteria than RA.

We keep going, and the science is creating new options. Wishing you continued good health and wellness.

jodipat77 | @jodipat77 | Jun 29 7:02pm

In reply to @annmo "Hi! I've been on both as well as several others (Enbrel, Humira, Methotrexate.) After being on..." + (show)

@annmo my daughter is on JAK inhibitors (Tofacitinib) for RA. She tried 4 biologics and rituximab infusions which never helped at all. She is so much better on these though and tablets so doesn't have needle phobia now. I have rituximab infusions fory Lupus. Wasn't a cure but did help with energy levels and less pain.

ngls00tosi | @ngls00tosi | Jun 29 9:04pm

In reply to @jw9 "@pm56 In some cases, like mine, there is not shortening the schedule because it is not..." + (show)

@jw9 I have been on Remicade for several years now. My rheumatologist suggested it because you can control and adjust the dosage in the timing of the infusions. I now have an infusion once a month and I have absolutely no side effects. My RA has been under control and I’m very thankful for that. I found Enbrel self-injected shots previously worked extremely well but became prohibitively expensive when I went on Medicare so I switched to infusions. Medicare plus my BCBS Medex covers once a month infusions.
Good luck in finding the solution that works best for you.

jw9 | @jw9 | Jun 29 10:11pm

In reply to @ngls00tosi "@jw9 I have been on Remicade for several years now. My rheumatologist suggested it because you..." + (show)

@ngls00tosi
Without Universal Healthcare we are given medications not because of diagnosis , but what insurance pays. I like that you used the word "prohibitively."

I 'm happy to hear your RA is under control. I have not had any progression of the disease and am also thankful

My seronegative RA seems to be morphing into PsA...different pain and rashes that are unexplained. From what I read in these support groups autoimmune illness does this not infrequently. It's part of the nature of these illnesses.

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