There is nothing I love more than being asked to talk more about a subject that I try not to talk about too much with people that I think may not care. I have read everything about MS and treatments and different issues that can come with the disease that I could get my hands on and I don't always get to share any of that knowledge too often. So it is with much pleasure that I am going to give more detail about my Tysabri experience. (I just want to thank all the little people... sorry, had an Emmy moment there.)
I started Tysabri In February of 2007 and started out getting it every 4 weeks. I went through the whole TOUCH program, which is a blog in itself, in fact I went through it twice because I was hoping to get it (Tysabri) done closer to home but my neuro moved to FL so I just stuck with the infusion center that is 2 hours away (and in my hometown, so I don't mind going there). They have it set up where you can get T. done a week early or a week late if your schedule won't work out for you to get it when originally scheduled. I noticed that towards the end of the 3rd week I would start getting symptoms kicking up, sometimes really bad. I would start having the pain and hot/cold sensations in my legs, my vision would get dimmer, I would get so tired I could barely move--all the things that made me a prime candidate for T. I told the infusion center and they told me that women seemed to burn through the T. faster and that is why you have the option to do it a week earlier. I'm not going to lie, they do try to push me back to 4 weeks sometimes but I stand firm and keep telling them that by 3 weeks I need to get it done again--I am scared that I will get some symptoms that won't go away if I wait too long. I told my neuro that I get it done every 3 weeks and she was ok with it. She just said some people need to do it that way. Getting infused every 3 weeks does not increase the risk of PML, the only thing that did increase it was using T. with other DMDs. The only down side that I have had is that I get sick a lot easier right after an infusion, but that only seems to be within the first few days, then I am back to my normal never-get-sick self. The IV site is never a big bruise like it can be with the other shots. The only time I get a bruise is from them blowing a vein. I hope this covers the basics, if not let me know.
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3 comments:
Thank you for expanding on your post from yesterday. I will pass it along to an MS patient who also has the 3 week problem.
Sam in NY
Your post says: getting infused every 3 weeks does not increase the risk of PML, the only thing that did increase it was using T. with other DMDs.
From reading on other boards (thisisms.com), the reason Avonex+Tysabri increased the risk was that Avonex interfered with the elimination of Tysabri from the blood, and they ended up with a higher concentration of T. It would seem that upping the frequency of dosing would also do that.
From what I have read the combination of Avonex and Tysabri together caused the immune system to be suppressed to the extent that an opportunistic virus was able to take over--much like full blown AIDS-- and cause the PML. Since T. has been back on the market there have been no new cases of PML and the risk has now risen to odds of someting like 1 in 5000 and they are expected to continue getting better. But I am certainly going to look into what you said about it not being eliminated... Thanks for the info.
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