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Rituxan Report

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Old 10-08-2017, 12:27 PM   #1
4-eyes
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Hi everyone,

Just thought I'd report on my experience with Rituxan. I have MuSK positive MG (19 years and counting) and I am quite refractory. Last year about this time I could no longer get Gamunex authorized, and luckily I'd already begun to pursue Rituxan.

On Jan 10 of this year I had one infusion. The effects were immediate but somewhat modest. My neuro ordered a second infusion on Feb 27 and I immediately went into the closest thing to a remission I've had in about 12 years. I got off of Cellcept immediately and I also began weaning from my 20 mg dose of prednisone. I'd been using pred non-stop since 2011. On July 31 I finished my last dose of pred!!! Oh yeah, baby!

I'd been doing monthly labs to monitor my lymphocytes. A couple of weeks ago the CD 19 count finally became measurable and I asked if I could be scheduled for another infusion. It's scheduled for later this month. Good thing, too, as I've become mildly symptomatic again. Still, I had a lot of good, symptom-free months! I even made it through a hot summer with no heat issues!

Finally, after all these years, I've found my miracle! I hope it keeps working forever!

Thanks for reading!
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Old 10-08-2017, 08:11 PM   #2
AnnieB3
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That's great news! I hope Rituxan keeps working for you!!! Make sure that you take good care of yourself with high nutrients, low carbs, lots of veggies, etc. in an attempt to ward off cancer.

Annie
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Old 10-08-2017, 09:26 PM   #3
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Thanks for the input. I'm the healthiest eater I know. Vegetarian and mostly organic for the last 8 years. Didn't stop the cancer! Went through that last year. Right now I'm "no evidence of disease" and hoping for the best.

In my case, the MG has been FAR worse than the cancer. My mantra is and always has been "quality of life over quantity." I had nearly no quality of life when the MG was in control. Now each day is a gift. We'll just have to see how many gifts I get.
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Old 10-09-2017, 11:56 AM   #4
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I am so glad Rituxan worked that well for you! I had 2 infusions about 2 years ago and they worked well for me also; not quite as well as yours, but definitely made a difference. I am calling my neuro for a blood test for the CD 19 levels because I think it is finally time to maybe have another infusion. But I'll take 2 better years for each infusion every time!
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Old 10-09-2017, 12:49 PM   #5
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Juanita, your experience with Rituxan influenced me to go ahead and try it. I think because I have MuSK MG I had the better response. It just seems to work better for us. Now, however, you ACHR folks have Soliris which is just as much of a miracle for many. You may want to ask about it, although the price tag is through the roof for it. It would probably take a lot to get it approved.

Stay well!
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Old 10-14-2017, 06:06 PM   #6
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Hi all. I am refractory too and just had 3 of 4 infusions of Rituxan. makes me really sick for a couple of days, but I am feeling serious relief from my symptoms.

I have had MG for at least 25 years, and was actually treated for Lyme disease at one point.

Finally, a neurologist found a 2.2 pound thymoma crushing my left lung and laying against my heart. I felt pretty bad all the time. After the surgery though, everything went to hell and my condition became severely worse over the next several months. It's been a slow battle of ineffective drugs, but this Rituxan seems to be working for now. I just don't know how long it will last.

Good luck to all of you!
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Old 10-14-2017, 06:17 PM   #7
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DynaGuy, Sorry you had side effects. I only had facial flushing the mornings after infusions and would sleep REALLY well for a few days. Never felt bad.

My improvements continued for months after the second infusion. Hopefully you will also have sustained relief, too.
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Old 11-24-2017, 05:27 PM   #8
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Thanks. Things have been pretty good.
If I could just stop getting thrush, or burning tongue, I would be really happy! Stuff hurts. Otherwise I've been really good since the infusions.
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Old 11-24-2017, 06:23 PM   #9
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I have had that since I was in the Hospital. If you find what helps you please post.
Mike
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