Connect
← Return to CLIPPERS: Looking to connect with others
Discussion
CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: May 22 10:18pm | Replies (444)Comment receiving replies
@loribmt
Thank you for your response. It is very helpful for me to have a confirmation that Rituximab may work on neuropathy, which I think I have to deal with at this time, in addition to scleroderma progression.
What was the dose of Rituximab used during first 4 infusions? The standard dose in RA is 1000 mg given twice two weeks apart every 6 months. You had 4 infusions - was it four times 1000 mg? Please share, if you still have this information.
The ASCT for scleroderma (at Duke) did not work at all and I am progressing now. This is not a surprise, as these older procedures developed before CAR-T therapy rarely work.
My neurological symptoms started similar to yours, at around 6 months post-transplant. In my case of autologous transplant, it should not be GVHD, but that what it looks like based on all symptoms present. My case is different, as I already have autoimmune condition, which turns my immune system on my own body. This case can also be autoimmune neuropathy triggered by my own immune system coming back "online" post complete wipe out done by the transplant. I did not have any neuropathy before the transplant.
In any case, Rituxan is now being used for scleroderma, which is my main indication. Looks like the way to go is with Rituximab. I am also starting Myfortic, a cousin of Cellcept. Both are used for scleroderma and autoimmune neuropathy.
I will see a neurologist soon to go over my neurological symptoms and to do additional tests. These symptoms can be both post-transplant complications and disease progression. I will keep posting my further experience.
Many thanks for sharing! It has been helpful, as always.
Replies to "@loribmt Thank you for your response. It is very helpful for me to have a confirmation..."
Connect
Hi @altabiznet I checked my records but can’t find the actual orders for the Rituximab dosages. But I received one infusion weekly for four weeks.
Right after I was admitted back to the BMT floor at Mayo, my transplant doctor was there to meet me in my room along with another specialist whom he’d called in. This was a neurology pathologist who specializes in movement disorders and autoimmune neurology. Between the two of them they came up with a diagnostic plan for testing and then met back a few hours later with the diagnosis and treatment. It was a whirlwind for sure.
The rituximab was started a week after my release from the hospital when I could return home. Within that first 3 days on the 1000 ml Solumedrol in the hospital, I was able to actually walk on my own again with a walker. By the end of the week, I was back to walking solo several miles daily around the clinic. My follow-up treatment besides the steroids (500 to 250 ml weekly for 9 months) was the Rituximab for the next month. With combination of those treatments allowed my spinal cord to fully heal. I had PT to help regain core strength and gait improvement.
For a several years I had what I referred to as ‘electric days’ where I’d have some zaps and tingles. But subsequent MRIs showed no new activity so that was awesome! Even my doctors had said, if they hadn’t seen the before MRIs to compare with they would never know the extent of the damage without comparison. So I was really lucky. Sorry, that’s more than I usually share.
I don’t know where you live but if you’re interested in a 2nd opinion from a specialist at Mayo, it would be worth the trip.
Here is a link for requesting an appointment: http://mayocl.in/1mtmR63
Have you been working with neurologist since all of these symptoms started? What testing have you had in relation to your neurological symptoms?