Doctor wants to switch me to this but I'm scared stupid.

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

Doctor wants to switch me to this but I'm scared stupid.

Postby eaglez » Tue Oct 02, 2012 1:13 pm

The virus seems like a major risk, maybe not worth it. My dad hates the idea as well after reading up on it.

The thing about it is the risk goes up the longer you are on it, then if you get off of it you are kind of screwed because you get worse than you were before and very quickly. Am I wrong about any of this?

Any experiences with RRMS?
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby gibbledygook » Tue Oct 02, 2012 2:06 pm

My neuro, a UK neurologist with a very limited budget won't countenance anything but beta interferon or copaxone because of the dangerous side effect profile of the latest drugs. However it may also be that he can't afford them. But he is extremely well respected. Got a first from Oxford...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby HarryZ » Wed Oct 03, 2012 8:09 am

eaglez wrote:The virus seems like a major risk, maybe not worth it. My dad hates the idea as well after reading up on it.

The thing about it is the risk goes up the longer you are on it, then if you get off of it you are kind of screwed because you get worse than you were before and very quickly. Am I wrong about any of this?

Any experiences with RRMS?


Like any MS medication, it works for some and not for others. But the big difference with Tysabri, of course, is the risk of PML and stopping it once you've been using it for a couple of years.

Obtain as much info as possible and whatever decision you make, ensure that you are as well informed as possible.

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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby stillfighting » Fri Oct 05, 2012 2:28 pm

I am not on any ms med at this time. I am getting alot of pressure from my neuro to go on Tysabri. I am trying to hold out until BG12 comes out.
I am not real happy about the risk of pml.. but more unhappy at the risk of the rebound effect. Keeping in mind Tysabri will have to be stopped at some point.
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby gibbledygook » Fri Oct 05, 2012 3:03 pm

Bg12 is likely very safe but with just unpleasant side effects so i laud your patience. Unless you have galloping MS I'd keep we'll away from the monoclonal antibodies...
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby stillfighting » Fri Oct 05, 2012 8:30 pm

My ms flare at this point is one of my strongest. My point being if I have to fight off PML in 2 yrs and worry about rebound what do I have to look forward too? I have about 3 months to wait for bg12. My neuro has however decided to hold out and not let me have I.V medrol. He says if it's that bad for me. I have to choose Tysabri NOW..
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby NHE » Fri Oct 05, 2012 10:48 pm

stillfighting wrote:My ms flare at this point is one of my strongest. My point being if I have to fight off PML in 2 yrs and worry about rebound what do I have to look forward too? I have about 3 months to wait for bg12. My neuro has however decided to hold out and not let me have I.V. medrol. He says if it's that bad for me. I have to choose Tysabri NOW.


Do you mean to say that he has refused to give you steroids? Have you had several steroid treatments recently? Otherwise, your neuro's refusal sounds highly manipulative and not the least bit ethical. It might be time for a new neurologist.


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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby HarryZ » Sat Oct 06, 2012 6:36 am

stillfighting wrote:My ms flare at this point is one of my strongest. My point being if I have to fight off PML in 2 yrs and worry about rebound what do I have to look forward too? I have about 3 months to wait for bg12. My neuro has however decided to hold out and not let me have I.V medrol. He says if it's that bad for me. I have to choose Tysabri NOW..


I agree with NHE on this one....your neuro appears to be blackmailing you!! I'd come right out and ask him if he is getting any financial gain from Biogen by prescribing Tysabri.

You can also point him to a small study done by the St. Michael's Hospital MS clinic in Toronto where they discovered that Tysabri had no effect at all for those patients experiencing a flare. Can't figure out,other than financial incentive, why your neuro is so adamant you start on the drug immediately.

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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby stillfighting » Sat Oct 06, 2012 5:38 pm

He prescribed 3 days of 1000 mg's each in Aug. At that time I requested paper work be filled out to start Ty. I found out my insurance would not cover it. They started the assistance program. It was just completed as of yesterday and went to the hospital for completion.. as of Thursday Oct 4th so they could finish up and see about setting an appt. I have let the dr know I don't want to do it. The dr's office have said it is my not wanting to it that has taken Biogen so long. Biogen said NO that is not what took so long. In the meantime..The dr said no to any more Solu medrol.. but the one thing he did say.. was if I did do any I could not do any of the 1 day a month of the 1000.. it HAD TO BE 3 DAYS .. SO I HAVE TO TAKE 3000 AT A TIME. THEN HE SWITCHED AND SAID NO.
decide on Tysabri.So if I went with Tysabri.. I would only get in 3 infusions...... assuming BG12 is on the marked in JAN 2013. I do understand it will not reach 100 % effectiveness right away.
It scares me to be with out a med.
Yes I wish I had another DR..at this time it would take me longer to get a referral and appt. I might loose my chance at BG!12 if I did. This neuro treats me for migraines too. I can't afford to loose this idiot at such a crucial time.. I am frustrated and disappointed beyond belief.
I have come to the conclusion most dr's are idiot's. I think one discussion that should be at the fore front of all health care reform in America and every where is: Do the health care people serving our people ever care. This includes nurses.
I would hate to describe some of the attitudes I have run into with nurses. My GP probably has one of the kindest nurses. She admit's she knows nothing about MS and knows no one with it. Yet she far exceeds the neuro's nurse's.
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby HarryZ » Sat Oct 06, 2012 8:07 pm

assuming BG12 is on the marked in JAN 2013.


Why are you assuming that BG12 will be on the market at that time? It is in Phase III trials which usually last 2 years and then it's normally several months before the FDA would approve it, even if it's fast-tracked.

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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby stillfighting » Sat Oct 06, 2012 8:41 pm

BG12 submitted it's application to the FDA in feb of this yr. It was at first fast tracked for a 6 months review. It then lost that fast track application.
Now it was up for the standard 10 month review.. Biogen is expecting a release date from them at the end of DEC.
The results of the clinical trials are starting to come out. Bg 12 has a rate higher than Tysabri.. with mostly stomach side effects and flushing.
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby NHE » Sun Oct 07, 2012 2:46 am

HarryZ wrote:
assuming BG12 is on the marked in JAN 2013.


Why are you assuming that BG12 will be on the market at that time? It is in Phase III trials which usually last 2 years and then it's normally several months before the FDA would approve it, even if it's fast-tracked.


Biogen announced the initiation of their phase III studies in Jan 2007.
bg-12-dimethyl-fumarate-f52/topic3445.html

They announced the filing of their NDA in Mar 2012.
bg-12-dimethyl-fumarate-f52/topic19497.html

Biogen's pipeline status indicates that BG-12 is in the "filing" stage.
http://www.biogenidec.com/research_prod ... px?ID=5778

FDA is expected to rule on BG-12 "later in the year" reported Sep 2012.
bg-12-dimethyl-fumarate-f52/topic20862.html
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby HarryZ » Sun Oct 07, 2012 5:50 am

Thanks for that info, NHE.

I had read somewhere that BG 12 wouldn't be available until sometime toward the end of the first quarter, 2013. It may have been a business related article. That was because of the set-up time required after FDA approval.

It will be interesting to see what Biogen charges for the drug....you know it won't be cheap!!

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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby stillfighting » Sun Oct 07, 2012 8:01 am

Yes, I know it won't be cheap. My prescription coverage will cover all oral and injectables 100 percent.
Or let me say this.. I do not see any trouble standing in my way.. at this time for 100 percent.
The last oral drug was on the market in 2 weeks after FDA approval. Gilenya was out right away too. I would expect nothing less of Biogen.. $$$ I doubt it will be later 3rd quarter, could be though.
That be a late prospect.. I have read end December is the expected approval date. I have also read Early Jan. Is the expected date too. I guess we never know what the FDA will do. It seems to be the drug with the least side effects so far ( sigh) so far!!! and it is held up BY THEM..
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Re: Doctor wants to switch me to this but I'm scared stupid.

Postby Gala » Sun Oct 07, 2012 8:35 am

I was on Tysabry for one year. Now I want out but I read that after you stop relapse 40% after 3 month. I want to try stem cell but for it you need to be off for 3 month. I have SPMS and actually feel worse than year ago. Just maybe not worth trying. But who knows...
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