Tysabri Question

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

Tysabri Question

Postby Murph » Thu Dec 27, 2007 3:02 pm

:roll: Hi Everyone, this is my first time on this site & I decided to join the bunch! I was diagnosed with MS 3 yrs ago & beleive Tysabri is nearly ready to be released in Australia. My neuro wants me to go on it, but I am extremly scared about the side effects!

Apart from the main one is there anyone else who knows what other side effects there may be.

Glad I have finally found somewhere to communicate with people in the same boat!

Murph
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Re: Tysabri Question

Postby HarryZ » Fri Dec 28, 2007 8:09 am

Murph,

This link will give you objective and unbiased information about Tysabri (Natalizumab)and any other drug that is on the market.

http://www.nlm.nih.gov/medlineplus/drug ... 05006.html

It is important to note that each MS patient reacts differently to the variety of medications that are available. Often you won't know what if any side-effects you will experience until you actually try a drug.

Whatever decision you make, ensure that you obtain as much information as possible, both pros and cons, before you decide.

Harry
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Postby Lyon » Fri Dec 28, 2007 9:18 am

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Last edited by Lyon on Wed Nov 30, 2011 7:23 pm, edited 1 time in total.
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Postby HarryZ » Fri Dec 28, 2007 11:08 am

Lyon wrote:Gosh Harry, I'm impressed almost beyond words!

If you keep up this admirable behavior I might take Ian up on his offer to retire from thisisms and hang around with him on the beaches of Spain.

Bob


I thought that would impress you :D

Seriously, the Medline website is one of the best sites to check out for information on virtually any drug. I'm sure that Murph will get the best objective information there.

I'm still not convinced that Tysabri is the wonder drug that Biogen would have us believe it is. But general usage for 18 months or so outside the clinical trial setting will likely give us better data. Reading on some MS forums what patients are charged for the whole process is another concern!

Take care.

Harry
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Postby superman » Fri Dec 28, 2007 12:03 pm

Thanks harry for posting all the possible effects. :wink:
But considering my own experience and the few patients who are getting it in my hospital, we've experienced just a very few side effects.
I can even say it's as harmful as a water glass in my case after 6 infusions.
Compared with
-Rebif(7 years) that i had to take 3 times a week , no big side effects exept feeling a bit depressed
-and copaxone(6months) that made me twice think i was dying
i do not think you have to be scared by tysa, even though the long term effects are still unknown.
Also still considering my little me , i am able to walk for 3 miles without hobbling when 6 months ago i couldn't go for more than 1/2 mile.
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Postby HarryZ » Fri Dec 28, 2007 12:24 pm

Superman,

While most patients don't experience the nasty side-effects of many drugs, these side-effects still have to be listed by the makers just in case they do.

From what I have read, this scenario is what most Tysabri patients are experiencing.....and so are the results. Some patients are having good results, some no changes and some not doing very well. Sound familiar when it comes to MS medications?!

It's not surprising your experiences with some of the CRAB drugs. I can remember when they first came out the MS docs were jumping with joy and pointing out on their presentation charts how effective they were going to be. They just seemed to forget about the bad side of these drugs and as more and more patients started to use them, the nasty side-effects surfaced. Their efficacy was and still is not that great. Hopefully Tysabri will show better results but time will tell.

Harry
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Postby Lyon » Fri Dec 28, 2007 12:40 pm

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Postby Lee » Sat Dec 29, 2007 12:30 pm

I have had 6 infusions. Last weekend, I ended up in the hospital with major depression. The hospitalist looked Tysabri and became extremely concerned. He said, "it is a very dangerous drug". I have no appetite, no sense of purpose and the list goes on.

My neurologist is out of the office until 1/2. I am finding the experience very frustrating.
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Postby Lyon » Sat Dec 29, 2007 1:39 pm

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Postby Lainie » Mon Dec 31, 2007 6:27 pm

I have had 5 Tysabri infusions, and I love it! I used to be on Avonex, which caused the yucky flu-like symptoms, the painful injection, and crushing depression. Since going on Tysabri, I feel better physically, but especially emotionally. Good luck getting on!
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Postby Loobie » Mon Dec 31, 2007 7:42 pm

That's good to hear Lannie,
I am in a trial for Tovaxin, but I have always "lurked" on this thread but never piped in. I saw Bob hanging around too! Are you omnipotent man? Sorry, I just had to do that, Bob is a great provider of information on the only other drug related thread I go to.

Sorry about that. Seriously, I'm glad it's working well for you. Especially since it sounds like you had about exactly the experience that I had on Avonex. I didn't mind the shots (manly interjection :roll: ), but the side effects would sometimes bury me. I can't knock anybody who it's working for, it just ruined my quallity of life. I have often thought that Tysabri, or even maybe LDN, would be my next choice if this stuff I'm getting ready to get doesnt work. I'm glad to hear you are doing well.

Lew
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Postby ewizabeth » Mon Dec 31, 2007 8:53 pm

Hi Murph and Welcome! :)

I'm taking Tysabri, and I'll get my 9th infusion next week. Some people have great results but there are some that don't do as well on it. I think I'm one of the lucky people because I'm feeling pretty good at this point.

I have improved energy at times and my previous bladder symptoms are almost non-existent most of the time.

I didn't count on any improvements so I feel fortunate. My hope is that it will slow down or stop progression for me. I didn't start working until after our two sons were in their teens (ten years ago or so), so I feel like this might allow me to continue with my career in business.

I just finally completed my Bachelor's degree in business while still working full time.

I don't attribute all of this to Tysabri, but I think it has helped me to feel a bit better to accomplish more.

I hope you'll have good luck with whichever treatment you decide to use.

Happy New Year!
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby Loobie » Tue Jan 01, 2008 7:59 am

That's awesome Ewizabeth, congratulations on getting that degree! The extra energy had to help out with that. My wife is going through nursing school and NOT working and I can't imagine what working and doing that would be like with MS. Good for you!
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Postby ewizabeth » Tue Jan 01, 2008 10:32 am

Thanks Loobie,

I work four days a week with Wednesday's off so that helped, but ten hour days on workdays. I also chose online college because I couldn't have done it if I'd had to add in the commute time to classes on a campus. The work was harder though, they had tough standards.

Considering that I started college about ten years ago I was really glad to finish and achieve this goal. :) I went on and off full time and part time through the years with several years off while my ill parents needed me on the weekends. It really feels good to be finished.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby Murph » Wed Jan 02, 2008 2:18 am

Thanks HarryZ - I will get on & check out the website. :D
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