Rituximab or Remicade for Rheumatoid Arthritis RA

@loriach
How did your Rituximab treatment get covered by insurance, under RA or under scleroderma ILD diagnosis? Did you have 4 infusions of 375mg as for ILD, or 2 infusions of 1000mg as for RA?
Please keep us posted on your progress with Rituximab. My rheumatologist decided not to give it to me at this time, as there is not a lot of data that it works on scleroderma ILD and skin.
I am looking forward to hearing from you and others with ILD, Scleroderma, RA, or peripheral neuropathy on Rituximab response rates.

@altabiznet

I haven’t looked at the cancer studies but I was told that they can affect the neurological issues. Like Parkinson’s. Horrible disease. That’s why we wait and watch. She just got out ICU for sepsis and toxic shock. Thats from
Trying the new immunosuppressants. She keeps getting infection from them and remains in long term use of steroids. Destroyed her teeth, her bones are bad and she gets terrible tears from long erm steroid use smothered is no win yet. Maybe a higher price car t will it seems like refine the neurological effects.
I am very hopeful about this therapy. It’s the first thing that anyone ever said put them in remission. Nothing does it so I wish you good luck in my daughter. Good luck in fact all of you need some luck.

My most recent experience with my rheumatologist in NJ: he was not convinced that Rituximab is the best choice for arthritis associated with scleroderma. However, there are more and more posts on BMT network how patients with RA, ILD, and neurological deficits like CLIPPERS are being prescribed Rituximab, and it works. My doctor has put his decision "on the shelf" to review it in 3 months. In the meanwhile, I am back on Humira biosimilar for arthritis (as it worked before my SCT transplant for scleroderma, which did not work at all) with Myfortic added to address scleroderma skin and ILD issues.

Best wishes

@judyresnick

To get to the right CAR-T clinical trial in Crohn's disease, you may need a referral from your daughter's gastroenterologist. To get considered by the clinical trial team, she will need to provide her records of initial diagnosis and all past treatments. They may require a letter of referral from her doctor. It is best to ask her GI doctor for CAR-T treatment or other clinical trial referral and where to go. He may be able to make all arrangements for you.
All US clinical trials are posted on http://www.clinicaltrials.gov. At this time, I could not find any CAR-T trials posted for Crohn's disease. But here is a link to the search for other clinical trials for Crohn's disease. You can see what is available in your area. Still, talking to the doctor and asking for help with finding right research opportunities may be your best shot. Good luck

Thank you for that. We are going to wait and see. It’s to early for her to risk it in a trial

@altabiznet

My Dx is Sjogrens and RA. The stronger pattern in the autoimmune Dx cascade is Sjogrens but I also have positive test results and family history of RA. Sjogrens is increasingly implicated in ILD and can occur before classic Sjogrens dryness symptoms. Not a lot of data but some interesting retrospective studies /data. In my case the ILD was preceded by five years of inflammatory arthritis flares increasingly severe. My ILD lung performance put me in the severe category at the time I first had ANY cough and shortness of breath.
I had the rituximab protocol for RA as starting point (2x1000 infusions two weeks apart). Not sure the official insurance coding.
My focus w my medical team is preservation of lungs as the priority (over joint inflammation). If it works the rituximab should treat both lungs and joints. I have some reassuring signs in that things seem stable still after I weaned off prednisone for two months now. I know my lung damage is likely irreversible so keeping things stable is the goal. I’m starting to try to recondition aerobically and have decided that two 20-40 min sessions of gentle dancing to classic R&B makes me happy and comfortable working out wearing O2 at home. Not comfortable yet to go back in to gym w my immune compromised state. Walking goes ok w the O2 but I have a lot of vertigo so it’s been dicey to try to return to walking which I love.
You mentioned derm w your Dx. I also have severe lifelong eczema on my hands. I was hopeful the rituximab might help that but was advised it doesn’t do anything for the inflammatory derm stuff. That has been my experience so far. Still use clobetosol ointment on hands when it gets out of control and triaminiclone doesn’t work.
Like many here I’m following the CAR-T trials and reported results with hope for the future! One company I’m tracking as they are working across a number of autoimmune conditions and have numerous clinical trial sites is Kyverna. Their focus is deep B cell depletion and reset of the immune system w a goal of long term remission. They have positive statements on their website on expanded access re trials. I’ll be discussing them in June w team Mayo.
kyvernatx.com

Hope this info helps on you and your daughter’s very challenging health journey 🦋💪🏼

@altabiznet
Sorry in reply I mixed your name up w the Mom and daughter also dealing with very tough autoimmune challenges. Best to you as well. I look forward to letting you know my Mayo assessment in June as you try to see if you may move forward on the rituximab path. So little data, so much need!

@loriach

Thank you for your response. Please keep us posted. Best wishes.