Daisy, I would get infused then push a mile in my wheelchair or swim 15 laps. It's nothing.

I set appt to see neuro wednesday because I forgot what nightly Copaxone inj were like and Ty's painless. I'd love to do Ty one month, Copaxone the next, rinse repeat and i'll ask but good luck. I KNOW a little of both would help me but it's not allowed. That or i'll stick with Copaxone for 3 months and go for Novantrone next week. I didn't know you had to take C while on Novantrone. That combo worked wonders on a lady at MS group. She's still in remission 4 yrs later after the 2yrs of N but she takes C every night.

I had my first infusion this morning. It took four sticks to get a vein, and I ended up having the infusion through a small (butterfly) needle! Other than that, It went okay.....I am just tired and have a headache tonight.

This is great info, thank you!!
 

I just stumbled upon this site and I'm so glad I did! This is great info, thanks so much to all for sharing!

I have had 2 infusions (and the JC test (neg) didn't know that put me in a long term study:rolleyes:) and so far so good. I got wiped out (fatigue) for 2 days after the first one, 1 day after the second. I definitely have more pep and the first month felt like my walking was better (more leg strength) but now that's not the case, as I seem to overdo it everyday due to not being as fatigued (work ft and have a 4 yo, husb travels sometimes).

The infusion itself is easy and I find it MUCH more comfortable and easier than steroid infusions. (no bad taste and no drastic effects on my body, plus I swear it just "feels" like a smoother solution somehow). While I'm a fan of C over the others, I definitely like not having to inject every day :) (needle-phobe). Biogen sent me a fleece blanket and I was like "whatever" (charge less for the meds and lower your marketing budget!) but I do get soooo cold during the infusion and for the rest of that day, so I brought it to the second one and it did help me stay warmer. Keep in mind, tho, I'm in MN and we are having a very cold winter....that doesn't help!

I do have a question, and that is, I wonder if anyone else experiences, or knows someone who does, eczema or skin rashes from the med? I'm not talking about an allergic reaction (called my neuro and confirmed that). About day 3-5 after and for the next week to two weeks, I have terrible difficulty with skin rashes, like eczema, widespread on several parts of my body. I've had sensitive skin, but not experienced this before Ty. It gets worse with certain foods. It's the weirdest thing, like the immune suppression brought out a food sensitivity or something? I know the side-effects include yeast infections - I took that for the more familiar kind you think of when you hear that, not a more generalized GI-skin thing, but I'm wondering. Is it just me? :o

Hi Bstnlives and welcome to our Tysabri thread! Glad you found us and sorry you have to be here!

Boy, I never heard of that reaction before. It certainly doesn't sound like fun!

I wonder if it isn't something that you had lurking that is getting treated while Tysabri is treating your MS...What I mean is I used to have small patches of what my doc said was eczema or psoriasis that never bothered me before Tysabri. After my first few infusions, I noticed that the tiny patches seemed to be more pronounced, more raised, but not severely and not itchy. It was sort of a "hmmm" thing more than anything for me. After a few infusions, I noticed that they were gone and they never came back.

The other thing I am wondering is if you might be gluten intolerant/sensitive. I don't know much about that but there are lots of folks out on the general MS board that have loads of info that may lead you in the right direction.

Hope you find some answers! Come back and let us know how it goes!

Thanks, Riverwild! Your thoughts are mine exactly :) I did happen recently to have a celiac test, which was negative, but I don't think that's the end of it. I do think there is something to the insensitivity/intolerance thing. So, I'm investigating that. (One interesting note, if the food is freshly made, like homemade pizza, it doesn't seem to be as bad as processed/packaged/restaurant food, even if it says its gluten free.)

The RN at my neuro agreed with me when I said basically what you said, which is that perhaps I had something hanging around which I'm seeing due to the immune suppression.

It gives me hope to hear that your issues went away after a few infusions. That, and my own dietary efforts, and I should feel better in awhile.

You rock, btw :) Thank you SO much for posting and continuing to post your experiences. I'm happy to hear that you are having so much success with Ty!

Hey Ty I'm back
 

Thought i'd leave Ty for Copaxone then Novantrone but I learned the last 2 were only successful on the people at MS group when taken together. The heck with that. How I forgot what nightly injections 365/yr was like is beyond me. Told neuro today let's go back on Ty & hopefully some new ones come out end of year. I pass on Gilenya. My liver takes enough abuse with all the meds/supps I take. I actually miss the chemo room. Tuesday I get to say hi again!

Hi Eddie! Just curious (new here), why did you leave Ty? I'm passing on Gilenya too, for the same reason.

My neuro said this was a good time to start Ty b/c within about 2 yrs (the magic PML watch time) there will be lots of good developments :)

Good luck on Tues!

Hi and welcome. Because i'm still losing sensory pretty much everywhere I have left to lose. Motor function is hanging in there with all the exercises I do so i'm back. I'm a very easy stick as well from all the workouts & eating right. I eat alot, but exercise sure speeds up metabolism :)
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I'm on the saline flush for #26 right now. So far, not a lot of side effects for this infusion. Yahoo! I have a meeting with the neuro at the end of March to discuss staying on Ty or going on Gilenya. I am thinking then I will get the stratify JC virus antibody test (even though my neuro does not think it is worth it because of false negative possibilities--he is waiting for Biogen to sort a few things out with the test and getting it on the official market). If I am negative I will stay on Tysabri -- please let that be the case because I love this drug! Otherwise I've reached the point where I don't think I can handle the PML risk anymore. My life/job are going great right now and I really don't want to end up in a nursing home bedridden for the rest of my life, or even dead for that matter. So I may join the MS pill popping club. Anyhow, hope all are doing well.

hi. I'm overdue for infusion 7 or 8 now. going through a break-up and single-parenting a 1 year old so things are really complicated. i'll try to do it week after next, so that's just a 1 or 2 week delay.

but i got the positive test result for JC virus. I know people who died of PML, because i've been an AIDS activist for 20 years and remember what it was like.

i'm really scared and sad. I don't want to be on this drug. I had 2 mild flares (sensory symptoms that totally resolveD) then a big scary one that started 2 months post-partum. I was diagnosed 3years ago but think i maybe had mild stuff going on going back 15 years before that.

So I appreciate what Tysabri has done, as far as putting the flare in check after 2 rounds of steroids and 1 round of IVIG didn't.

But the literature says that post-partum flares don't predict future progression or risk of future flares. So do I need to stay on Ty?

But now I've got likely-permanent neuropathy in feet and legs, and other more transient/less noticeable symptoms as a scary reminder that flares are real.

And I'm also scared of the immune reconstitution syndrome that could happen if I go off Ty.

I couldn't tolerate copaxone, the supposedly mild one - went down to every other day and still was too sick from it.

I'm thinking I'll stay on Ty to get through the hot summer, and then consider going off, and maybe on something else to see me through the risk of the immune reconstitution, and then decide whether to stay on or off treatment.

please share your thoughts with me. I'm sad.