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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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My neuro talked me into getting Rituxan infusions...1 every 4 weeks he has ordered. Anyone have any info or experience from Rituxan? The IVIGs didn't last long at all he says.
Thanks |
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#2 | |||
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I got Rituxan in December. Two treatments four weeks apart. I got much better right away, but improvement has seemed to dwindle a little over the past few weeks. I had blood drawn this week to check for cd19 and cd20 cells. If they have returned, I will get more infusions.
I did have an allergic reaction during the first infusion, but IV Benadryl took care of it. Allergic reaction is more likely to occur during the first infusion, when they speed up the drip. On the second infusion they did not exceed the previous safe rate and I had no reaction. Be sure to ask for Tylenol, solumedrol and Benadryl pre meds. My dr. didn't order them, but I had researched and knew to ask for them. If you have any more questions, please ask. |
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"Thanks for this!" says: | AnnieB3 (04-24-2014) |
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#3 | ||
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Thanks. Monday is my first infusion. Though waking up this morning I'm feeling quite nauseated. Not sure why though. Hopefully when seeing my neuro I didn't catch anything. I take Prednisone already so not sure about the solumedrol. Will ask the infusion nurses. Btw what blood test were u given? Thanks I'm am praying rituxan helps. My case has been a hard one.
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"Thanks for this!" says: | AnnieB3 (04-24-2014) |
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#4 | |||
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I didn't get a blood test beforehand, which I found out later I should have.
My case was very tough too. That's why I was offered Rituxan so early on. The solumedrol is just to cover the infusion period. They may have to adjust it since you are already on prednisone. Prednisone only makes me worse. If you are sick, you need to reschedule your infusion. You are not supposed to have it if you have an infection. |
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"Thanks for this!" says: | AnnieB3 (04-24-2014) |
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#5 | ||
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Had my first Infusion Monday which was yesterday, Praise the Lord God above all went well. Had no side effects from the Infusion, and today I am not tired. Nurse told me that I cannot go out into public for the first couple of days then to just watch out for people that are sick. Because well, if we get sick it takes away what the Rituxan is supposed to do for us. Hoping for the best from this treatment!!! It's like an IVIG cept the nurse said the side effects usually happen within the first 30 minutes to an hour...so no headache, nothing...just yayness and the wait.
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"Thanks for this!" says: | AnnieB3 (04-24-2014) |
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#6 | |||
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So glad you are doing well. Keep us posted on your progress.
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"Thanks for this!" says: | AnnieB3 (04-24-2014) |
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