1. < Autoimmune Diseases

Does more Rituxan make a difference?

Posted by jlk1323 @jlk1323, Dec 1, 2021

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 1, 2021

Welcome, @jlk1323. Allow me to bring in other members who have experience with rituxan for autoimmune disease like @kathrynmc @becsbuddy @geegie @janett18.

You're asking some great questions. Did you doctor give you any indication of how many treatments you may need?

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2 replies
jlk1323 | @jlk1323 | Dec 1, 2021
In reply to @colleenyoung "Welcome, @jlk1323. Allow me to bring in other members who have experience with rituxan for autoimmune..." + (show)
@colleenyoung

Welcome, @jlk1323. Allow me to bring in other members who have experience with rituxan for autoimmune disease like @kathrynmc @becsbuddy @geegie @janett18.

You're asking some great questions. Did you doctor give you any indication of how many treatments you may need?

Jump to this post

Thank you for your replay. I had my first two doses in August and I am schedule to get another round in February. Beyond that, my rheumatologist has not said.

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1 reply
Kathryn M. Carroll | @kathrynmc | Dec 1, 2021
In reply to @colleenyoung "Welcome, @jlk1323. Allow me to bring in other members who have experience with rituxan for autoimmune..." + (show)
@colleenyoung

Welcome, @jlk1323. Allow me to bring in other members who have experience with rituxan for autoimmune disease like @kathrynmc @becsbuddy @geegie @janett18.

You're asking some great questions. Did you doctor give you any indication of how many treatments you may need?

Jump to this post

I did not start Rituxan treatments as recommended by my rheumatologist, because I wanted to get a second option. I was seen at Mayo in September of this year. My PFT was slightly improved and my lung function was stable, since my last one done in April. The doctors at Mayo recommended that I stay on current medications unless something changes. They also agreed with my doctors diagnosis and my treatment. I am scheduled for PFT at the end of December. I feel really good, so I am hoping everything looks good with my next PFT, and that I can stay on Azathioprine. Kathryn

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 1, 2021
In reply to @jlk1323 "Thank you for your replay. I had my first two doses in August and I am..." + (show)
@jlk1323

Thank you for your replay. I had my first two doses in August and I am schedule to get another round in February. Beyond that, my rheumatologist has not said.

Jump to this post

@jlk1323 I had 4 rounds of rituxan for an autoimmune inflammation 0f my brain. I felt like a new person after the 1st 2 rounds ( over 12 months), but the 3rd and 4th rounds didn’t help at all. Some people react positively to the drug, others not. I then switched to cytoxan, which was difficult but it was only 8 months. Every single person is so different! I felt so much better after the 2 rounds of rituxan, that we went ahead with our trip to Europe. Pre-Covid, of course!
Your doctor may be non-committal because he /she wants to see how you tolerate the drug and how well it works for you. It would be well worth another chat with him/her.
My brother=in=law sent these articles to me. (He’s a pharmacologist/toxicologist). This article compares rituxan to oral drugs, but it does have good information
https://www.iodine.com/drug/rituxan/alternatives
Are you seeing a rheumatologist for treatment?

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