@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!