My take on Tysabri after 7 infusions

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

My take on Tysabri after 7 infusions

Postby Loobie » Tue Jun 09, 2009 9:53 am

Well after 7 infusions of this stuff, I thought I'd take the time to post my thoughts and obvservations concerning it. A quick history to give a starting point. Progressed from 1 on EDSS to 4.5 in a very short period of time prior to trying Tysabri. I was in the Tovaxin trial and opted out after 8 months in the extension, so to me, I was going untreated for roughly 2 years and progressed pretty fast. Was using a cane full time, even in the house, for about six months. Was losing hope, and you guys know what it's like to be progressing unabatedly; it sucks.

So there's my starting point. The infusions themselves have been very benign. I don't feel anything at all in terms of side effects that day. However, I seem to have a trend that starts about the 2nd or 3rd day out. I get a bit fatigued and brain foggy and it seems to last a week, or sometimes even a bit longer.

I felt nothing in terms of "active drug involvement", but I've obviously gotten some function back as I am now a 3 on the EDSS and don't use a can at all. I can't bring myself to throw it out, but I haven't used it for a good spell.

So here's my take and the usual disclaimer about it being MY take, even though it's obviously my opinion since I'm writing it. Do I think it's effective? Yes I do. In it's intent I absolutely do. I was progressing over a fairly long period of time without any recovery and that has stopped. The only big change is that I started on Tysabri, so I'm concluding that it is the reason.

Since it's not "active" in terms of instilling repair, I definitely think that any getting better is simply realized by it keeping the progression at bay. That's what's advertised and that's what I feel it does. Since I haven't been on any other approved meds save for Avonex, I can't say it's better than any of the others. I didn't progress much on Avonex either, but I was just starting my journey and I can't say whether the Avonex did that or if it was just the first five years of MS. But since the Tysabri seemed to stop the active downhill slide I was on, I'll say it WAS the Tysabri in that case. It hasn't got me back to where I can exercise and still just see MS as a nuisance (that's my goal) it either only works to a point, or I have stuff that my body just won't be able to fix even if there's a 'cure'.

I guess the only other conclusion I can draw is that I must be RR. That one has been tricky for me since I don't have "knock you down" relapses. And also since I seemed to just get worse slowly over about a year and a half. And presumably since it seemed to be what it was that stopped the slide, I can only draw that conclusion. I'm getting a full MRI workup on the 15th (head and both spines) and I'll see if I have any active lesions or not. I just switched neuros due to insurance and he wants fresh ones, but they'll also be a good baseline for my upcoming vein surgery.

After that is done, I plan to stay on Tysabri for a while. Then, knowing me, I'll expirement and go off of it for a while and see what happens. If progression starts to come back, I'll go on it again. I don't want to be on this stuff forever, but if it keeps the MS at bay, I won't hesitate to do so. I hate reading about the PML deaths and I also hate taking a drug with a mysterious mechanism of action. What else is it 'maybe' doing?

So I have to give Tysabri a ringing endorsement. I do feel it stops progression since it did in me. I am so hesitant to say that since after all the ups and downs are part of the natural disease course, but since it was inserted during a prolonged period of progression and it stopped, I have to give credit where it's due.

Having two weeks out of every month where I feel very optimistic is wonderful. I'd like to be that way all the time, but if two weeks of the blahs (NOTHING like the interferon flu) is the side effect, I'll take it. So no shot site reaction, no nasty side effect except the fear of PML, and my thoughts that it stopped my skid make me say that I would recommend it to anyone who is having troubles with the other drugs. To me, I don't know why the other drugs are even out there since this seems better, but since the risk of PML is present it will always carry the moniker "to be used when the CRABs fail".

I like it and am very grateful to be on it, but come on CCSVI!
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Postby akaheather » Tue Jun 09, 2009 9:17 pm

Lew,

I don't know what it is about you, but everytime I read your posts, I think of "Rudy" (Ruetiger), from Notre Dame. :)

I hope you get your "Rudy" ending when this CCSVI thing finally plays out the way we all hope it is going to for you. I bet there won't be a dry eye in the house. :wink:


Heather

I sure hope we get to cheer for you in July!!
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Postby Loobie » Wed Jun 10, 2009 4:43 am

Thanks Heather; me too!
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Postby catfreak » Wed Jun 10, 2009 1:16 pm

Lew,

I agree with everything you said about Tysabri.

I feel so much better than I did on Rebif that I sometimes do way too much and pay for it a day or two later.

I have my 4th infusion on the 22nd and an MRI. We'll see how that looks and go from there.

I felt nothing in terms of "active drug involvement", but I've obviously gotten some function back as I am now a 3 on the EDSS and don't use a can at all. I can't bring myself to throw it out, but I haven't used it for a good spell.


Did you mean you don't use the "cane" at all or the "can"??? :twisted:

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Postby Loobie » Sun Jun 14, 2009 4:42 pm

Sometimes it's both CF!!
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Postby dreddk » Wed Jun 17, 2009 6:29 pm

Loobie,

My wife's experience mirrors yours. She was reasonably pro-active in jumping on Tysabri before any of the Crabs and after only two relapses. She has not progressed nor had a relapse since being on it.

Having said that the fear of PML can niggle away. She is switching to 6 weekly to give her peace of mind that this may theoritically reduce the odds of PML

If it were me (my wife kicks me whenever i say this of course) I would be taking Tysabri as soon as I were diagnosed...but of course its easy to say that when its not you making the decision...

Dreddk
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Tysabri after 9

Postby richjack4 » Sun Aug 23, 2009 5:08 pm

Tysabri was strongly reccomended while I was in the midst of an attack that has yet to subside. At the time of my first infusion till now, I really don't know what, if any, effect it has had upon me. The constant dizziness, vision problems, balance issues, pain and spascity are still the same as they were initially. Just don't know if this drug is keeping them from getting worse. That's the million dollar question I guess. If anyone has any in-sight I'd sure love to hear it. Thanks,,,,,,Rich

http://msdivorceddad.blogspot.com/
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Postby catfreak » Sun Aug 23, 2009 5:45 pm

Hey Rich,

When Lew posted this and I responded to it I had received my 3rd and felt so good. Now after #4, 5 and 6 I do not feel this way. Things just got worse almost like a minor relapse.

Lew is no longer on Tysabri, he had a really bad relapse and stopped. You may want to read his blog to get the lowdown.

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby richjack4 » Sun Aug 23, 2009 5:58 pm

Thanks so much for the reply. I'm not high on it but my doctor is adamant that I will see results. I told him I would do 2 more then I wanted the full work up before I make any decision on going forward.........Confused in NJ.......[url][/url]
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Postby prof8 » Tue Aug 25, 2009 6:59 pm

I've had 14 infusions. No relapses and nothing new or enhanced on the 2 MRIs. During the first 6-8 months sometimes I would feel dizzy and have total brain fog where I couldn't think well after the infusion for up to a week. Now sometimes I get slight nausea, headache, and mild fatigue for about 2 days. I chose it pretty much from the start to be aggressive with the disease and I am EXTREMELY satisfied. I'm glad I chose it. So someone above mentioned the little worry about PML kind of in the back of your mind. I still have that but I still wouldn't change my decision if I had to go back and do it again. I think it's the best drug out there in terms of low side effect profile, ease of use, and significant reduction of MS symptoms.
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Postby Loobie » Wed Aug 26, 2009 3:42 am

I have to chime in here. While I don't think it was effective, I had many people in the chairs next to me while getting infused that had all kinds of good stories. I can't say whether it works or not since it didn't for me, and that's all I know, but I have talked to many people who wouldn't go off it for anything. It just didn't do it for me. I'm looking for something that stops it. Will I find it? Don't know, but at a 4.5 EDSS, I can't take too many more attacks or progression.
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Re: Tysabri after 9

Postby HarryZ » Wed Aug 26, 2009 6:48 am

richjack4 wrote:Tysabri was strongly reccomended while I was in the midst of an attack that has yet to subside. At the time of my first infusion till now, I really don't know what, if any, effect it has had upon me. The constant dizziness, vision problems, balance issues, pain and spascity are still the same as they were initially. Just don't know if this drug is keeping them from getting worse. That's the million dollar question I guess. If anyone has any in-sight I'd sure love to hear it. Thanks,,,,,,Rich

http://msdivorceddad.blogspot.com/


Rich,

I find it unusual that a MS doc would recommend Tysabri while you were in the midst of an attack.

A clinical trial of the drug at St. Michael's Hospital MS Clinic in Toronto that was done on patients who were experiencing an exacerbation, determined that Tysabri had no effect for patients in this situation. I would think that this trial information would be readily available to MS docs everywhere.

Harry
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