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Does more Rituxan make a difference?
Hello! I was recently started on Rituxan for my autoimmune illness (dermatomyositis, maybe also scleroderma). I have received my first round and my second round is approaching in 2 more months. I was wondering if anyone felt even better after more rounds of Rituxan. Do improvements add up? Or is it more like maintaining status quo? I am trying to figure out if this is my new baseline or if further improvement may still be ahead.
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@maria0 I think it was snowfire that said she had good results. I am still waiting! I do think it is prednisone that is making me feel bad and not the Rituxan!
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1 Reaction@becsbuddy hello may I ask how are you diagnosed with the brain inflammation I am trying to see a neurologist to see if there are any issues since I have major organ involvement from the lupus.
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1 ReactionI have Sjogren's which caused small and large fiber neuropathy. I take IvIg every 3 weeks. I took 3 sets of Retuximab, 6 months apart with no bad or good result.
@maria0 Well, I was admitted to the hospital, barely cognizant. Since I had had an MRI done before then, the neuro doc came over to do a biopsy. He removed a small sample that definitely showed inflammation. This is info from my sister and husband
I’ve had MRIs every 3-4 months to assess my brain. It has been a LONG road!
I hope you get things figured out soon.
@becsbuddy thank you wow that seems really over the top. What were your results and did you get better? I think it would cause me too much stress as I’m anxious as it is. Thanks for getting back with me. Hugs.
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1 Reaction@becsbuddy may I ask why you thought you had inflammation in your brain or what led you to get the MRIs done thank you
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1 Reaction@maria0 I thought that I’d had a stroke because I couldn’t really walk, my voice had changed, and I really didn’t know what was going on. I never thought about inflammation , the MRI showed lesions. My therapist called us and told Mike to get me to the ER ASAP. From there I really rely on my husband and sister because I don’t remember anything!
Hard to think of it or remember it.
Be your own advocate!
Hi jlk1323@jlk1323,
Did you have any response to Rituxan with your skin condition? I have scleroderma and I went through with autologous SCT nine months ago. It was a very tough high-dose chemo regimen, and the recovery period is still challenging. So far, I have seen few signs of improvements with skin and joints. Hoping to see more in the near future. Interested to hear more about your progress, as Rituxan was offered to me off label, but I chose to do SCT. However, Rituxan may still be helpful in the future. There is more research going on for SC with CAR T therapy, but no approved treatments yet. Your insights regarding Rituxan are appreciated.
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2 Reactions@altabiznet
Good Morning:
I reached out to my doctor to see what the possibility of Rituxan for my PMR and she indicated that it is still in the experimental stages for PMR treatment. Is anyone on this thread using this drug for PMR?
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1 Reaction@thereselefever
Hi, just a thought. Since Rituxan is already approved drug, you may be able to get it off label, if your doctor believes it may help. Actemra and Humira may be other 2 options from already approved drugs that target in some ways Interleukin-6, but for PMR would be off label as well. Humira worked better for my SS joint inflammation prior to transplant, and it was easier to tolerate. Hope this helps.
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