Tysabri to start soon......

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

Tysabri to start soon......

Postby mpalla » Fri Dec 13, 2013 6:48 pm

My neuro wants me to start Tysabri. I have done all kinds of research and read on this page. My thoughts have been scrambled on this issue for days. I just had JC bloodtests. He said his paitents both JC + and - are on it. I've Bernard on Copaxone, tecfidera and avonex and been sicker to different degrees on them. Life is too short to be sick 5 out of 7 days a week. If there are people currently taking or have tried please help me out with your thoughts. Thank you.
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Re: Tysabri to start soon......

Postby HarryZ » Fri Dec 13, 2013 8:59 pm

mpalla wrote:My neuro wants me to start Tysabri. I have done all kinds of research and read on this page. My thoughts have been scrambled on this issue for days. I just had JC bloodtests. He said his paitents both JC + and - are on it. I've Bernard on Copaxone, tecfidera and avonex and been sicker to different degrees on them. Life is too short to be sick 5 out of 7 days a week. If there are people currently taking or have tried please help me out with your thoughts. Thank you.


If you are JC + and have been on other immune-suppressive drugs previously, your risk of getting PML is very high. Since you were sick on these other drugs, there is a good possibility that you will be sick on Tysabri. And stopping Tysabri, if you had to, has its problems as well.

I guess you have to ask yourself it you are willing to take a big risk. It's a tough decision.

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Re: Tysabri to start soon......

Postby mpalla » Sat Dec 14, 2013 3:34 am

Elaborate on the stopping Tysabri?! I did read (I think this drug) washout 6 mos?! Sounds more in-depth than stopping a pill and being sick a couple days....I have been contemplating and checking for weeks. Could be worse off than I am now...not liking what I read about iris....is that what you mean by stopping??
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Re: Tysabri to start soon......

Postby CaliReader » Sat Dec 14, 2013 7:41 am

If it were me, I would want to know whether I was jc positive or not. You didn't say whether you know this.
Here is one resource discussing the risk and how it varies if you are positive or negative for the virus. PML is often deadly, and otherwise disabling.

http://multiple-sclerosis-research.blog ... zumab.html
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Re: Tysabri to start soon......

Postby HarryZ » Sat Dec 14, 2013 8:16 am

mpalla wrote:Elaborate on the stopping Tysabri?! I did read (I think this drug) washout 6 mos?! Sounds more in-depth than stopping a pill and being sick a couple days....I have been contemplating and checking for weeks. Could be worse off than I am now...not liking what I read about iris....is that what you mean by stopping??


Some patients, due to various reasons, have to stop using the drug. When this happened, some of these patients ended up becoming much sicker than they were before they started. A small study was done with 21 patients and while the study was valid, it only involved a very small group.

http://abcnews.go.com/Health/Healthday/story?id=4508664

There hasn't been a lot of research done on this and you can bet that Biogen, the makers of Tysabri, aren't going to be spending a lot of time and money in this area which could end up having a very detrimental effect on the sale of their drug.

I would really encourage you to sit down with your neuro and have him/her explain all the pros AND cons of Tysabri BEFORE you make an informed decision on whether to use it or not. If your neuro is very hesitant to do this and brushes off your interest in hearing about the cons, then beware! Tysabri is a VERY powerful immune system altering drug and the marketing and sales of it always pushes the pros and not the cons. There is not very much information about the long term use effects on patients. On another thread, it was pointed out that well over 90,000 Tysabri users have had some negative side effects with PML being the most serious and devastating.

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Re: Tysabri to start soon......

Postby gusmarie » Sat Dec 14, 2013 10:17 am

I have had 80 infusions of Tysabri and am JC+ and was on Copaxone for 3 years prior to Tysabri and Avonex before that. I have less flare-ups and milder ones. But everyone is different and you need to feel confident in Tysabri before you start it. My risk factor for PML is pretty high but I am willing to take the risk to stay mobile. And because I am so closely monitored I am confident that it would be found in time. PML isn't the death sentence it once was if found in time. But this is me and the decision I have made after doing research. You'll have to draw your own conclusions and feel comfortable with your decision. I'm just giving you my experience to add into your research in order to make an informed decision. Good luck to you.
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Re: Tysabri to start soon......

Postby NHE » Sat Dec 14, 2013 2:03 pm

HarryZ wrote:
mpalla wrote:Elaborate on the stopping Tysabri?! I did read (I think this drug) washout 6 mos?! Sounds more in-depth than stopping a pill and being sick a couple days....I have been contemplating and checking for weeks. Could be worse off than I am now...not liking what I read about iris....is that what you mean by stopping??


Some patients, due to various reasons, have to stop using the drug. When this happened, some of these patients ended up becoming much sicker than they were before they started. A small study was done with 21 patients and while the study was valid, it only involved a very small group.

http://abcnews.go.com/Health/Healthday/story?id=4508664


In some cases, the problems can be much worse.

Lethal MS following Tysabri withdrawal
tysabri-antegren-or-natalizumab-f11/topic21087.html
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Re: Tysabri to start soon......

Postby HarryZ » Sat Dec 14, 2013 4:13 pm

In some cases, the problems can be much worse.


Yes they certainly can be. Biogen leads people to believe that because of the monitoring of patients and some of the treatments that have been developed, PML is not as bad as it once was. This, of course, helps some people think that things have improved.

While the death rate from PML is not as high as it once was, the severe brain damage done by this infection leaves most patients in very poor shape, never to recover. Reading the pros on Tysabri and the numbers that Biogen throws out and then reading about PML really makes it a tough decision for MS patients contemplating starting the drug. Add the situation where neuros don't inform the patient with all the info doesn't help.
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Re: Tysabri to start soon......

Postby NHE » Sat Dec 14, 2013 5:19 pm

HarryZ wrote:While the death rate from PML is not as high as it once was, the severe brain damage done by this infection leaves most patients in very poor shape, never to recover. Reading the pros on Tysabri and the numbers that Biogen throws out and then reading about PML really makes it a tough decision for MS patients contemplating starting the drug. Add the situation where neuros don't inform the patient with all the info doesn't help.

In the following study, folks on Tysabri that got PML had roughly an 87% chance of becoming moderately to severely disabled from the PML.

RuSmolikova wrote:Among 38 patients with Karnofsky performance ratings by their physicians at least six months after PML diagnosis, only five were in the "mild" disability category. Half were rated as moderately impaired, and 37% were severely disabled and required custodial care.
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Re: Tysabri to start soon......

Postby Anonymoose » Sat Dec 14, 2013 5:43 pm

One thing I have not seen mentioned is the fact that if you go jcv+ on tysabri or anything, you are effectively limiting your future treatment options...unless you don't have an issue with pml risk. That means if something spectacular with far better results comes out but still carries the pml risk, you might not be wise to take it. Are you willing to sacrifice something better for tysabri? Without a doubt, something better will come along.

I jumped in and took something that might cause me to go jcv+. BUT I have more faith in the medicine I chose than I do in the standard dmds and I *think* my risk of going positive is rather low based on the one time course of my med. (no idea if it will work)

It's a tough choice.
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Re: Tysabri to start soon......

Postby mpalla » Fri Dec 27, 2013 6:48 pm

Anonymoose...just found out today I'm JC negative. I am set to start Tysabri on Dec 31....night before my 42birthday. I'm excited and scars as usual. The more reading I do.....the more confused I get. I prayed to find peace with my decision and haven't achieved that yet. Just trying to feel good again. my sister will take me since my husband is no kind of support and has basically checked out of the 13yr marriage. Still praying for the answer and clarity.....
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Re: Tysabri to start soon......

Postby mpalla » Fri Apr 25, 2014 7:34 pm

Tysabri #4 this week. It finally feels good. Thankful for this drug appearing to help....feeling good...or the new norm hit by a bus feeling. I am pleased from the several I've tried. :)
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Re: Tysabri to start soon......

Postby Anonymoose » Fri Apr 25, 2014 8:02 pm

I missed your post last time. Sorry!! I'm so glad it's working for you. May the improvements continue. :)
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Re: Tysabri to start soon......

Postby mpalla » Sat Apr 26, 2014 6:37 am

Thanks Anonymoose! I'd feel the new norm if I didn't have a cold. I'm impressed with my neuro and the drug. Will update you. Thanks again!
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