I think the worst response has been flu-like symptoms for a week after infusion. One person here did report ms symptom increase she attributed to rituxan. Some people have done it with no ill effect. I hope we fall into that group!
From what I have read on treatment of ptld with rituxan, it seems to usually be quite well tolerated. It seems the same for most in the ms-rituxan trial results I have read. I think we've got a good chance of being okay.
Best of luck with your first infusion! Please do share how it goes for you. I hope it works!
as a bit of history of my "adventure" with ms:
i have rrms, diagnosed may of this year, 2013. i have most of the common symptoms, :
Walking (Gait), Balance, & Coordination Problems
and most of my symptoms have not totally gone into remission, but i have had minor temporary improvements with some.
i was on avonex since my dx and had minor flu symptoms for the first 3 weeks then tha side effects all went away. unfortunately the avonex wasnt doing as well as expected, i had new lesions though there was some improvement in older lesions so my dr changed it to the rituxan.
i am positive for the JC virus antibody so i will need frequent blood tests and MRIs to keep an eye on it.
something i find funny is a lot of the MS medication side affects are also MS symptoms so i dont know how you can really tell if the meds are the problem, though, new side affect symptoms would be suspect.
the only reaction i had during the infusion was slight rash on my arms and back. the nurse slowed the flow for about 30 minutes then increased it slowly, 50 cc's per half hour and i didnt have any further problems.
i was given tylenol and benedryl (oral) and a pregnazone infusion prior to infusion, then another antihystemin, (i dont recall the name of that one), after the rash started.
infusion completed about 9 hours ago and i got a severe headache about an hour ago and advil took care of that.
I am hoping the rituxan works as i wasted quite a long time on the avonex and infusions every 6 months or so is much better than weekly injections.
i hope everyone is doing well with their tratments!
thank you for you time
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I wish I had good news. Went for my first infusion but was told that my insurance, ( AETNA ) would not authorize Rituxan as it is not approved as a treatment for MS by the FDA. So I need to wait or choose another treatment. As a patient with SPMS, I have few choices or none at all.
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