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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In 2000, I had a rare autoimmune disease called Pemphigus Vulgaris. I was given high doses of Prednisone which gave me side effects but didn’t put PV into remission. At that time, IVIG of antibodies had just been introduced…it was considered experimental by insurance companies. I was finally approved and received infusions once a month for 3 days in a row for 2 years all the while taking lower doses of prednisone which gave me prednisone induced cataracts and osteoporosis, but never went into remission. A new dermatologist I had been seeing told me about Rituxan and how it was helping people like me with PV to go into remission. It was discovered by a doctor in the UK for cancer patients when other treatments had failed. I was considered a good candidate and immediately received my first infusion in a series of 4, once a week. By the end of the second week, I was feeling so much better and by end of fourth week, lesions were healing. As per my doctor, I repeated the infusions six months later, all the while weaning off prednisone. I had no side effects from Rituxan and PV went into remission in November 2003 and I was completely off prednisone at the end of May 2004. Rituxan is a miracle drug that put me into remission as of today, for over 20 years. It was Prednisone did so much harm to me that I still have to deal with today. Good luck!

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I too am experiencing the wonders of Rituxan. I have a very rare autoimmune disease called Esophageal Lichen Planus. I was getting endoscopies with dilation every 4 months to keep my esophagus open enough to be able to eat without choking. I've had 2 courses of infusions over a period of one year and am due in Nov for my third. I haven't had an endoscopy since April. I also believe that Rituxan is a miracle drug!

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Profile picture for snowfire @snowfire

I too am experiencing the wonders of Rituxan. I have a very rare autoimmune disease called Esophageal Lichen Planus. I was getting endoscopies with dilation every 4 months to keep my esophagus open enough to be able to eat without choking. I've had 2 courses of infusions over a period of one year and am due in Nov for my third. I haven't had an endoscopy since April. I also believe that Rituxan is a miracle drug!

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@snowfire how long does it take to feel the wonders of Rituxan?

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Profile picture for bswpb @bswpb

@snowfire how long does it take to feel the wonders of Rituxan?

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@bswpb I noticed a difference after 6 months. My guess is it would vary depending on what ailment it is treating. I know if is most often used for RA - the nurses who administered by first set of infusions stated they had never treated my particular autoimmune disorder, ELP, before. I convinced my gastroenterologist to let me try it after reading a medical journal article about someone with my condition being successfully treated with it. That was one year ago.

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Profile picture for snowfire @snowfire

@bswpb I noticed a difference after 6 months. My guess is it would vary depending on what ailment it is treating. I know if is most often used for RA - the nurses who administered by first set of infusions stated they had never treated my particular autoimmune disorder, ELP, before. I convinced my gastroenterologist to let me try it after reading a medical journal article about someone with my condition being successfully treated with it. That was one year ago.

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@snowfire I was afraid of that!

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Profile picture for bswpb @bswpb

@snowfire how long does it take to feel the wonders of Rituxan?

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@bswpb I felt the effects of Rituxan after only 2 weekly infusions. After the 4th week, my last infusion, everyday, I felt better and better. I did a 2nd round 6 months later and Pemphigus was completely gone. Rituxan was my miracle cure!

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Profile picture for barbarajesse @barbarajesse

@bswpb I felt the effects of Rituxan after only 2 weekly infusions. After the 4th week, my last infusion, everyday, I felt better and better. I did a 2nd round 6 months later and Pemphigus was completely gone. Rituxan was my miracle cure!

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@barbarajesse I wish my response were like that!

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I have been on Rituxan for 8+ yrs for rheumatoid arthritis. Two treatments every six months, 1000mg per treatment 2 wks apart. It has kept my RA at bay. No complaints except I am slightly allergic to Rituxan. I start to get a itchy throat right after they start the IV. My doctor came up with a protocol of IV predisone and benedryle before they start the Rituxan. It works great.

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Profile picture for purehope2022 @purehope2022

Really hoping the best for you. I've had 8 sets of infusions. Began with 4 weekly every 6 months for 3 years...had about 2 years off where my disease was not active. Then started with 2 weekly infusions every six months with the addition of Tavneos in an attempt to get me off prednisone. I have been on it since 2018. I am down to 1 mg which is the lowest dose I've ever managed. Be well. Keep positive and fighting.
Blessings

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@bswpb well that’s nice to hear. I’m glad that you’re doing much better. I start my first infusion of the same next week. I was pretty hesitant at first started with MYFORTIC 360, added benalysta inject. Did not notice improvement with the injection so I stopped. I’m starting the infusion next week hoping for the best keeping my fingers crossed.

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