I've had 66 Ty infusions.How many have you had?

[ms man]

[Chowda]

2

A winner is you

[ru4cats]

I checked the other day, and I'll have #50 next month! Woo hoo! Hard to believe it's been almost four years since I started this journey with Ty.

[ms man]

I checked the other day, and I'll have #50 next month! Woo hoo! Hard to believe it's been almost four years since I started this journey with Ty.

Does PML concern you?

[Scooter24]

I will be getting #50 on Tuesday.

[lindaincolorado]

92

I do keep updating so, many of you already know.
I believe pml is rare and do not give it much thought.

[ru4cats]

No, PML doesn't concern me. Even though I'm still JC- after at least 5 tests, I know there is a yearly 2% seroconvert rate. However, I also know my risk of getting cancer, having a stroke, being in a motor vehicle accident etc. are all higher than PML. At my age (62), I would rather take the risk of PML in exchange for the benefit of holding my MS at bay. I'm going for quality of life rather than quantity.

[ms man]

I do keep updating so, many of you already know.
I believe pml is rare and do not give it much thought.

I know PML is rare but so is MS and we've got it.Just saying.

[ru4cats]

New PML information

I found this PML information on another MS Forum. I particularly found the PML risk guide slide interesting.
Basically, if you stay JC-, your PML risk remains 1/10,000. I'll take those odds.

http://multiple-sclerosis-research.b...-february.html

[LL60]

I have had 61 infusions.

Thanks for the information, I love it when people share because it so hard to get good information sometimes, but there is nothing new there in the charts. I am looking for any information anyone can find that goes above the 1.5 that he always uses. These charts haven't changed since last summer. They never go above the 1.5.

My doctor can't find information on this either. So, rather than go with what we don't know, we stick with what we do know: Tysabri has been like a cure for me. I will not give it up just on the information that it currently being put out there. No way.

Hard decisions for people to make. Each has to come to their own decision. Please keep sharing information so we can all stay informed. British, German and Wall Street websites seem to carry the most up to date information. I first downloaded all these charts last summer from an investment web site. After all; it is all about the money. I took them into my doctor and we went over them together.

It seems like as time passes we get less and less information. Three years ago, I found postings on just how people were recovering from PML (bedridden, returned to work, needs help with daily activities, etc.) Now you can't even find out what country they are from. Hard to understand why this information is being kept from us. Informed consent means informed.

[ms man]

I found this PML information on another MS Forum. I particularly found the PML risk guide slide interesting.
Basically, if you stay JC-, your PML risk remains 1/10,000. I'll take those odds.

http://multiple-sclerosis-research.b...-february.html

What are the odds of getting MS compared to getting PML?

[ru4cats]

1/750. What's the risk for TTP? 1-6/1,000,000. I had a dear friend who died from TTP. My new motto is "life happens". A good day is when my feet hit the floor.

[golfore]

I had about 80 and I'm JC+. My titer is 1.95. The neuro refused to let me stay on it. It was worth the risk to me. I would get back on it if I could.

[dyin_myelin]

long term use-whole picture?

Hi guys,

PML risks completely aside, what is it like to be on Tysabri so long?

Did you see any further improvements down the line?
Have you flared since beginning Ty? How has this compared to how often you were flaring before you started?
Are your liver functions, WBC, etc. stable? How often do you check? Get MRIs? Test for antibodies?
Have you or are you considering spacing out Ty infusions? I am especially interested in this because the infusion nurse said she saw no breakthrough disease activity at 8 month intervals. I weigh 107 lbs. 5'7" and would be interested in that infusion schedule instead.
I read in a medical textbook that Tysabri after five years may permanently alter the immune system for the better, so congrats.

[lindaincolorado]

I have had no progression Thank G-d.. When I started I had been going downhill.
liver function( and lots of other lab work) tested every 3 mths-all o k.
My QOL greatly improved and it's now been over 7 1/2yrs:

I remember reading something about people who were smaller than average getting Tysabri differently but, I don't remember more If it were me I would find this info!

Take care