Considering Tysabri

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

Re: Update on Tysabri Treatments

Postby Lyon » Fri Jul 27, 2007 12:10 pm

ewizabeth wrote:I don't think I have them, because I can feel it working.
Hi ewizabeth,
So good to hear it! Tysabri may not be everyone's choice but the idea is to preserve as much of yourself as possible through the next few years and I think....No, I'm sure that you made the right decision. I'm REALLY glad that you are finding good results.
Bob
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Postby ewizabeth » Fri Jul 27, 2007 12:19 pm

Thanks Bob,

Yes, if I can hold out until we have a solid pill available... that will be good. My worst worry so far with Tysabri is that I'll have shy veins on my infusion day. 8O Not fun... lol
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 itsjustme » Fri Jul 27, 2007 12:37 pm

Ewizabeth,

OK. That's it! There are way too many similarities between you and I.

I get my third infusion in downtown Chicago on Tuesday. I've also noticed how I can almost feel the twenty-eighth day arriving for the next infusion date. Any yes, my veins roll and hide from the needle. Last month I was poked four times. The first poke left a bruise, as the vein blew, which remained up until yesterday.

Not too many side effects at all. But I did wake up yesterday with a tiny eye infection.

I think I'm not getting worse which is a good thing, of course.
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Postby Lyon » Fri Jul 27, 2007 12:41 pm

Hi ewizabeth,
I've always wondered how important people with MS consider oral drugs.....how much effaciacy they would be willing to trade off to avoid injections.

It's estimated that Tysabri is 65% effective and with it in mind that it's a monthly infusion.....would you be willing to trade to a daily pill proven to be 50% effective and a similar side effect/safety record as Tysabri?
Bob
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Postby ewizabeth » Fri Jul 27, 2007 12:58 pm

itsjustme wrote:Ewizabeth,

OK. That's it! There are way too many similarities between you and I.

I get my third infusion in downtown Chicago on Tuesday. I've also noticed how I can almost feel the twenty-eighth day arriving for the next infusion date. Any yes, my veins roll and hide from the needle. Last month I was poked four times. The first poke left a bruise, as the vein blew, which remained up until yesterday.

Not too many side effects at all. But I did wake up yesterday with a tiny eye infection.

I think I'm not getting worse which is a good thing, of course.


Wow, we are similar aren't we?? 8O :D No infections here but I noticed that I have a bit of IBS when the infusion starts to wear off... :?: :?: Also, my ancient problem with canker sores has returned... :?: :?:

Last month, the nurse blew three veins before getting into my right hand that has the big veins. Monday I'm not having my three morning cups of coffee, I'll drink gallons of water the day before and that morning, and eat salty foods on Sunday night as well. That should help. Also, I take a water pill blood pressure pill. I'm going to skip it on Monday morning. I think I'll do fine with those precautions.
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 ewizabeth » Fri Jul 27, 2007 1:02 pm

Lyon wrote:would you be willing to trade to a daily pill proven to be 50% effective and a similar side effect/safety record as Tysabri?
Bob


No way Jose'! It would have to be at least as effective or better for me to change. Or, the once a year infusion in trials right now that's looking good (forget the name) -- that one has even better efficacy in the trials than Tysabri, according to my neuro.
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 Lyon » Fri Jul 27, 2007 1:09 pm

ewizabeth wrote:It would have to be at least as effective or better for me to change. Or, the once a year infusion in trials right now that's looking good (forget the name) -- that one has even better efficacy in the trials than Tysabri, according to my neuro.
Hi ewizabeth,
Good! You look at it the same way I do, but I don't have MS. With a disease as heinous as MS it's essential to go with the highest effectiveness possible.

I'll have to ask dignan about that yearly infusion because it doesn't come immediately to mind.

Bob
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Postby Jean » Wed Aug 01, 2007 12:20 am

I think the yearly infusion is campath. (gasp, I'm becoming the french version of Mr Pipeline - Dignan)
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Postby Lyon » Wed Aug 01, 2007 8:43 am

I'll bet you're right. I don't know why that didn't come to mind! Thanks Jean.
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Postby renrank » Mon Aug 20, 2007 2:26 pm

I'm doing ok but the spasms and pain are relentless. I'm thinking about calling the neuro for something to manage the pain, though I hate to take anything that might dull my thinking.



Have you tried Baclofen for the leg spasms? It worked for me!
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Postby ewizabeth » Mon Aug 20, 2007 3:30 pm

renrank wrote:
I'm doing ok but the spasms and pain are relentless. I'm thinking about calling the neuro for something to manage the pain, though I hate to take anything that might dull my thinking.



Have you tried Baclofen for the leg spasms? It worked for me!


Yes, I take Baclofen 10 mg 4x daily. I just increased one of my AD's so the pain has been a bit better.

Also, it's getting slightly cooler here so maybe that will help with some of my symptoms.
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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