Looking to start Tysabri

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

Looking to start Tysabri

Postby stillfighting » Sun Sep 09, 2012 5:11 pm

I am trying to decide if I should start Tysabri. One of my biggest fears is the rebound effect of having to stop the Tysabri. I don't have any garantee I can take it. I guess 2 yrs max.
Bg-12 is soon to come out we hope. I know it is not suppose to be as good.
I am progressing and that scares me. I do think Ty is the best drug.
I have to wonder if it would be worth it to know all of it would be lost as soon as I quit taking Ty?
I am looking to connect with anyone who stopped taking it and why.
Thank you
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Re: Looking to start Tysabri

Postby HarryZ » Wed Sep 12, 2012 6:49 am

stillfighting wrote:I am trying to decide if I should start Tysabri. One of my biggest fears is the rebound effect of having to stop the Tysabri. I don't have any garantee I can take it. I guess 2 yrs max.
Bg-12 is soon to come out we hope. I know it is not suppose to be as good.
I am progressing and that scares me. I do think Ty is the best drug.
I have to wonder if it would be worth it to know all of it would be lost as soon as I quit taking Ty?
I am looking to connect with anyone who stopped taking it and why.
Thank you


Trying to decide on whether to use Tysabri (or any MS approved drug) is a difficult decision to make. You probably already know about the dangers of PML associated with the drug and there are other concerns such as severe cases of herpes simplex and other infections that can take place because the immune system is compromised by the drug.

And we have read about those who have stopped taking the drug and end up with a lot of problems.

You did not mention how long you have been diagnosed with MS or what level of severity it is with you. If you are doing relatively well at the moment you may want to consider waiting to see what course the disease may take.

Whatever decision you make, be as well informed as possible before making it. Discuss all aspects with your neurologist and don't just rely on one doc's opinion. The best of luck at whatever direction you take.

Harry
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Re: Looking to start Tysabri

Postby stillfighting » Wed Sep 12, 2012 9:27 am

I am still walking .. I think I can hold out for BG-12. I think it is the right thing to do. I know that is what I should do.
Any benefits gotten from Ty would only be for a few years.. then it would be lost..... and at the risk of other things.
Infections and pml.. so I might get a really great 3-4-5 yrs.. but by the time I got to 3 yrs my risk of pml is so high I can't sleep at night.
I am then 53. or a little older..Of course if I loose my ability to walk and do not pick tysabri.
I will always think I made the wrong turn.
It's not death I fear, it's not being able to walk.. well not just not being able to walk.
Nerve pain and loss of freedom. I am exercising and eating right. I am fighting back. I am doing everything I can to make it.
I know all of us MS people are tough and we rage on..
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Re: Looking to start Tysabri

Postby Zac » Thu Sep 13, 2012 3:58 am

Hi,
I'v been diagnosed for 18mths with agressive RRMS and been on Tysabri for 12mths, I stopped my infusions last month after being informed I am now JCV positive, I was negative to start, with chances of 10 000 : 1 now am told I'm 350 : 1 of developing PML.
I would rather face MS than both PML & MS, I was told Tysabri would help stabilise my MS but never seemed to, infact I felt worse from the off, please don't let my experience sway your decision we are all individuals who respond differently to medication, there are great success stories out there but unfortunately not in my case, I have too much to live for so will take my chances without Tysabri.

Good luck with whatever you decide,

Best regards.
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Re: Looking to start Tysabri

Postby stillfighting » Thu Sep 13, 2012 5:18 am

Thanks for the input, I have not had the test yet. They are not going to test me first. (unless I request it and it would change my mind)
Since it takes so long to get back the results.. and all the expense of the test. Biogen told me it to take it. They said the test was free to me.. Biogen has been much better to me than my Dr..
I just saw where another oral drug passed the FDA last night. It does not have the impressive numbers that the others do.
only 31 to 36 percent.
But it will be in the wings if BG-12 does not make it. I think kick in the Vitamin D
I was thinking why is it so many think the DMD's are great at 30 % yet the rebound effect is not so bad at 40% we have these odds that just suck for us.
One thing that is for sure I still have MS and if I go with Tysabri I will have to stop taking it for some reason. The risk of PML being on of them. Within the next 2-5 yrs. The odds are way before then. The odds of PML are higher than what I like.
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Re: Looking to start Tysabri

Postby Zac » Thu Sep 13, 2012 5:47 am

Hi,
I just feel as if I'v been a guinepig for the last year, bearing in mind my neuro is not 100% about my diagnosis and says I'm not a straight forward case ?
Although he tells me I'm RR I haven't experienced any clear remission periods - I guess you do as they recommend because they wear white coats etc.
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Re: Looking to start Tysabri

Postby HarryZ » Thu Sep 13, 2012 6:16 am

stillfighting wrote:Thanks for the input, I have not had the test yet. They are not going to test me first. (unless I request it and it would change my mind)
Since it takes so long to get back the results.. and all the expense of the test.


I find it hard to understand why a responsible doc would not have you take the JCV test before considering Tysabri!!! You would hate to think that he has a financial gain to make by having you go on the drug.

I would insist on having the test, especially if Biogen tells you it can be provided for free.

Harry
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Re: Looking to start Tysabri

Postby stillfighting » Thu Sep 13, 2012 7:02 am

I thought knowing was part of the touch program. I just found out it was not. I told them at first I was so sure I wanted to start I was fine. Then I backed out, now I am glad. Not sure he is what I call responsible.
But he is all I have he has the script in his hand right now.
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Re: Looking to start Tysabri

Postby stillfighting » Sun Sep 23, 2012 3:55 pm

Zac can I ask did they put you on any DMD when you stopped TY.. ? They said I could take the test but it will now take a month to get the results back.
Fast forward to one month it will be Oct22.. just that much closer to BG-12 Did you see any gains on TY?
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Re: Looking to start Tysabri

Postby HarryZ » Sun Sep 23, 2012 5:44 pm

stillfighting wrote:Zac can I ask did they put you on any DMD when you stopped TY.. ? They said I could take the test but it will now take a month to get the results back.
Fast forward to one month it will be Oct22.. just that much closer to BG-12 Did you see any gains on TY?


BG12, if I can recall, is now into Phase III trials. If that is the case, then it will be several months before it would ever get approved for MS use by the FDA.

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Re: Looking to start Tysabri

Postby Zac » Mon Sep 24, 2012 7:59 am

I have appointment with neuro Wednesday 26th to discuss alternatives, I am dubious wether to start different meds so soon after stopping Ty, which I personally think made me worse, I initially had only symptoms to suggest I had carpal tunnel syndrome, now I can virtually walk eventhough a recent lumber puncture came back clear..very frustrating, no DMD's offered, will see how things go just watching diet etc for a while.
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Re: Looking to start Tysabri

Postby stillfighting » Mon Oct 08, 2012 5:31 pm

Zac I know a few who have had to stop TY and they were put on Copaxone. It is thought to maybe stop the rebound effect. It is suppose to be done right away. I don't know anyone who has been off of it long enough to know as of yet. So maybe that might be an option for you.
I know there is no data to back it up.. but these people come from an area of a lot more ms'ers than I do and better dr's
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Re: Looking to start Tysabri

Postby Zac » Fri Oct 12, 2012 7:29 am

SF, My next step is to start alternative treatment to address my alignment / atlas and jaw, I will stay off all drugs by choice whilst I go through the process otherwise I will not know what is doing what.
No mention of any drug to specifically combat the "rebound effect" was mentioned when I saw my neuro, he was eager for me to continue with Tysabri !!
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Re: Looking to start Tysabri

Postby stillfighting » Fri Oct 12, 2012 10:27 am

Zac would love to know what alternative treatment (s) you are going to try. I am at this time very against TY I have decided against it. I guess I will never totally shut that door if I was to start loosing the use of my legs.
However they don't work great some days. I hang in there.. then take a walk or go to bed.
Get back on track and keep going. So far I am NOT going to take it. I AM HOPING FOR THE REMITTING IN RR TO KICK IN.
I blame the ms first, then the drs and the drugs for doing this to me. I would get a lawyer. Yes I really would.
I think I might.. I know it would make it nearly impossible to ever get a dr to treat me for anything that came up. Don't laugh at my age things come up..I think Gilenya should be sued.
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Re: Looking to start Tysabri

Postby Zac » Sat Oct 13, 2012 1:43 am

SF, I was tested for CCSVI with the intention of having the procedure, I was then informed I wasn't a candidate and was dismissed although I was told my problems were being caused mechanically.

I then had a consultation with a Dr Amir of Putney, UK, who confirmed my issues, I haven't had any treatment yet although I have my first appointment on Thursday 18th Oct, if you look at CCSVI from the main menu you will see many related threads relating to atlas / jaw /skeletal alignment by people who are experiencing some amazing benefits.

I am also waiting for some so called remission, with a clear lumber result and questionable diagnosis I am not convinced with Dr's & drug's and so must explore all other avenues..
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