This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello everyone,

in the midst of a relapse right now (haven't had symptoms or meds since 2006)

My neuro think Tysabri would be the best option for me since i've had bad experiences with other therapies.

I'm still scared of possible risks vs. benefits... but need to start thinking long term.

Any comments? experiences (good and bad)?

Many thanks,
Meegs

Meegs,

I did great on interferon for a little over 3 years. Then 'it turned on me' and the side effects became absolutely intolerable. I am now on Tysabri and I have no side effects. I mean we all know the PML risk, but as far as just taking it, it's like getting an IV of saline for me. And I think it helps as well. I went through 2 years in the Tovaxin trial where I really went downhill. I started Tysabri and seem to have stopped rolling down that hill! Not an endorsement, since well know what the RR stands for. So give me about a year and I'll get back with an 'official grade'.

There was also a good article about 2 years out on Tysabri in the latest MSFYI newsletter. I said that people actually do better in the second year on Ty than the first. I sure hope so.......

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Hi Loobie,

Thanks so much for the reply.

How have you found the Tysabri CARE program... my understanding is that you get your own case worker, correct? How does it work in terms of support inbetween IV's?

I called today to start the whole enrollment process and get the ball rolling.

What's that?

Bubs,

Go on Tysabri.com and you won't have to look very far. There is a low incidence rate of a nasty side effect (going tango uniform) called Progressive Multifocal Leukencepholopathy. Now if I spelled that last one right, I get a cookie or something. It won't take long on that page to see what PML is about. I think maybe 6 or 7 people have died in the last few years from this brain infection that is 'unleashed'. Apparently about everyone in the general population has the virus. It's nailed a few people, but as a % of the people taking it, it's like 6 people out of 35,000 or something like that and apparently they had other immune compromised issues. Don't quote me on any of those facts or figures. It's all quite well published. They won't let you go on it as a first line I don't believe. You have had to try something else and been unable to tolerate it.

I know you are searching right now. One thing that I did was go to Youtube. There are lots and lots of videos about all the drugs on there from patients. It was worth it to me to go there and I stayed for a few hours. There's loads of stuff on there.

Meegs,

The TOUCH program is probably what you are referring to (it may be called CARE in the Great White North. You do get an individual case worker and they basically walk you through the whole process and also answer questions you may have. They also 'vett' your insurance and let you know everything about how your insurance will cover it. It's different since it's an IV. Something about needing to go to a clinic to get infused makes some insurance look at it like major medical and you get to pay whatever split you are liable for like the 80/20 or 70/30 that most insurance companies use for major medical. Or you could have it recognized as just a med. Different policies treat it different, but your case manager will get that all worked out for you. As far as the med. itself and side effects. Like I said earlier, it gives me none. I feel a little run down that evening, but not always, so that could just be normal fatigue. It hasn't been bad for me so far, and the once a month thing is defintely desirable.

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One piece of information I think may just of been a little unreported. I remember reading about the condition when it first became an issue with Tysabri, and it sounded pretty damn nasty. However, the makers were quick to point out that "it wasn't life threatening" if caught early enough. The one thing that was missing for me was the actual prognosis for recovery once you had it. There was no talk of that? On my last neuro visit, I asked the neuro about it, and he said the prognosis of having the condition, if you survived, was far from good.

So from my understanding, only 6 or 7 dead, but the rest who developed the condition, are not in a good place right now.

I think you are right about that. It states it something like "death or severe disability result", or something along those lines. I'd be interested in that as well. Part of TOUCH is that they make you tell them any change in anything once you go on Tysabri. From what I understand, it actually 'presents' kind of mildly, so they really ask if you have had any changes in thinking, mood, basically anything. Then I guess it's actually easy to diagnose, but like you said, once diagnosed, maybe not so good. I do believe if it's caught straight away you can end up all right, but I guess it's also pretty hard to catch something that starts out not making you feel all that different from your MS!

And the new procedure is to do a plasma exchange to get all the Tysabri out of you. Not fun to think about that's for sure, but hell, I take worse odds than getting PML just by opening the front door every day. However, it's kind of like a plane crash. Odds are low to get in one, but you don't want to be in that low odd group because of the outcome.

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i start my adventures in Tysabri starting March 24.

*taking a deep breath*

I get my fifth on the 11th. The breaths get more normal.

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I get my fifth on the 25th in March.
No side effects. Not a single relapse so far(compared to 8 attacks for the 2 years before Tysabri) and a better walking, even though the improvement did reach a limit.

random question... are you allowed to bring people with you to your infusion? ie: my best friend has offered to come with me to my first one and stay with me for the full 2 hours. Is this allowed?

And if its not allowed... bringing an iPod or something is cool, right?

I think that's going to vary by site. I've seen people bring in their spouses, and I think my site would let me bring anyone I wanted if I said I was going to be having some anxiety about my first dose. I bet they will be fine with it if you make sure and ask first. I've taken my Ipod in before and never even been asked about it. I've seen books, knitting, laptops, Ipods, so I don't think they restrict what you bring in as long as it won't disrupt anyone else who may be getting it alongside you.

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will be having my third this sunday. People bring in gameboys etc, but generally we all chat!
I've had no side effects like I used to get from the interferon. I did however get some infections this week, ie ear/throat/eye. I presume they are both interlinked. Still, beats relapses!

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horse of a horse!
Diagnosed 2001, r/r.

Bringing a friend for an infusion is not a problem.(at least here in France,where we're not so underdeveloped ) and since you're feeling quite anxious you should definitely come with your friend.

Otherwise tysa IV is not different from steroid IV.

also little corrction: in my message above i say i'm about to have my 5th IV when it's my 25th.

Sups,

You are getting your 25th. There was a recent study published which talked about the second year being more protective than the first year. I need to ask; did the whole experience feel any different in the second year? Or did it just feel like business as usual? Just curious (from an underdeveloped tysabri patient )

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