Any Tysabri users want to change my mind?

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

Re: Any Tysabri users want to change my mind?

Postby HarryZ » Thu May 16, 2013 7:44 am

It's a scary predicament I find myself. I think I should go on something to stop progression but am unsure of which one. And all this research is giving me a headache- and I usually have them anyway!


Jen,

This is a situation that many MS patients find themselves. Some, like yourself, spend the time and energy to do as much research as possible before deciding what direction to go.

Many MS patients leave everything up to their doctor and depending on the doc's experience and retlationship with the drug companies, one could get pushed in the wrong direction for his/her situation.

I'm going to agree with Cheer in that something like Tysabri is over-prescribing for first line treatment.

Whatever your decision, you have to feel comfortable with it and don't allow the doc to push you into something that you don't feel right.

Harry
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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Thu May 16, 2013 8:07 am

Harry I think At first I was the latter in the aspect that I told the neurologist that and I quote directly "my life is in your hands so whatever you tell me to do I will do" .

And then I kind of had an awakening so to speak after meeting so many MS comrades. And then ,as you, I think what relationship does he ave with the drug company that he's pushing Tysabri on me? Is he getting rich off my MS-while I am suffering and he's on his yacht? Lol

I don't feel right about any of them. But I believe I should start something, no?

My best friend, who is my advocate, is telling me that we are going to fight this with no meds. Kinda scary.

Tomorrow is my appointment and I will keep you posted.

I thank you Harry for consistently being a constant source f good advice and I look forward to much more of it!

Jennifer
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Thu May 16, 2013 8:28 am

I don't feel right about any of them. But I believe I should start something, no?

My best friend, who is my advocate, is telling me that we are going to fight this with no meds. Kinda scary.


Hi Jen,

Yes, scary indeed!

But if you tell your neuro that you don't want to go on any drugs as this time, be prepared for a less than pleasant reaction. I've heard stories where the doc refuses to see the patient again in that situation. How sad!

Hopefully your neuro is interested in your well being as opposed to his own beliefs or financial situation. Years ago, my wife (since passed away) used an alternative drug called Prokarin. It had only one clinical trial behind it but it worked in reducing my wife's several MS symptoms. The neuro prescribed it for her even though he wasn't a backer of the drug but he saw that it worked for her.

Please keep us posted as to how things work out. The very best of luck to whatever decision you decide to make.

Harry
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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Fri May 17, 2013 2:15 pm

Signed the dotted line today to start Tysabri in a couple of weeks.

When asked why they are going so aggressive right off the bat, it s because besides the numerous lesions I have on my brain, there is one on my spine.

I want to continue to walk my daughters upstairs to take their baths. Doctor said the a tysabri will make that happen.

Wish me luck in the uphill battle.

But I will continue to live- even with MS.
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Fri May 17, 2013 3:02 pm

I want to continue to walk my daughters upstairs to take their baths. Doctor said the a tysabri will make that happen.


Jen,

The best of luck in your battle. Hope Tysabri works for you.

Sure hope your doc's crystal ball is accurate!

Harry
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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Sat May 18, 2013 6:40 am

Haha Harry oh the sarcasm!! I am trying to be as positive as I can!!! Lol
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