24th infusion and have to make a decision

[Lendi]

First, I see my neuro about every 3 months. I have some other problems besides MS, that he treats.

A few appt. ago he said that I was coming up to my 24th infusion and we might want to talk about a break.

Then, when I asked about it he totally changed and said the chances of my getting PML were low despite the fact that I was first neg. for the JCV and then positive.

At my last appt. he talked to DH and me, indepth about Ty. He said, because I'm allergic to the other drugs, that if I go off I'll have to go back on the injections and take a low dose of steroids.

And, that when I go back on TY it may not work. Taking a break could mess me up and I'd really have problems then.

DH is in panic mode. Ty scares him sooo badly.

So, I have to decide what to do and quite honestly I just don't have a clue.

[LL60]

Lendi -
I think you are in the same boat many of us are who are staying on Tysabri, either over the 24 months period or with a postive JCV test or having taking immunesurpressents - either one of the above or two - maybe some all three.

Only you alone with those you love and those you trust can make the decision. Your doctor changed on things, because information is changing. All the time.

I so feel for those who have gotten PML - those who if they had not been Tysabri whould not have. Who were just trying to deal with MS. And they ended up worse for it.

You put your post out there. Soooo, I'm thinking you were like some feedback and some opionins.

40,000 people die each year from the flu.
90,000 people die each year from mistakes made in hospitals.
And such numbers can go on and on for many things.

Things happen in life. And while no use "daring" fate, you have to do what is best for you. For me.....Tysabri is what is best for me. My biggest fear of PML is the fact that I would have to stop Tysabri if i got it.

I can not any injectable. My doctor is afraid of the pill due to a death in the practice after the person got chicken pox shortly after taking it and died. So I don't have a lot of options either. And Tysabri is working. Amazingly well.

That you see your doctor every 3 months is good. Let your husband write all his concerns down and see if your doctor can address them at the next app. When you make the app. let them know that you will need some extra time. I don't think you need to make the decision right today. Or tomorrow. So take a step back and do your research and ask all the questions you need to.

There may be something better than Tysabri out there in the next year or two or three. And who knows after that. What stem cells will prove out to do. Do what you think is best at the time with the knowledge you have at this time.

Maybe ask for a second opinion?

Let us know what happens.
Has your husband watched the viedo on how Tysabri works. It's pretty cool. And since men like to fix things and know how things work, it might help him.

[0485c10]

Me i have to break down what you wrote into facts.

1. At the time i started tysabri, there was a strong belief in suspending ty for a period of time, after 2 years to allow the immune system back into the brain for a duration of the suspension.

That policy has since been discredited-- so the change you experienced in your doc's advice makes sense has an explainable background.

2. The fact that you tested jcv+ once, means you are always jcv+ regardless of any future tests.

My view on options and reasons for my views:

#1.)Someone posted and the post sounded truthful. That she had spoken to a biogen nurse who told her at the time that the risk of getting PML was in this order:
1. past use of an immune suppressant
2. length of time using tysabri >2 years
3.frequent infections like sinus, uti ect.
4. jcv+ status.

so a positive jcv test has the lowest probability of getting PML. the jcv test is more a negative test, it only means something if consistently negative. no one has gotten PML without having jcv antibodies. a person can aquire the antibodies after the test but to actually get PML they have to have jcv antibodies---the test only means something in 1 direction: negative. positive not that much.

You will have 2 of the risk factors. You will never have all 4, but you could have 3.

You can continue on Tysabri and if the 3rd risk factor develops use that as the sign its time to stop tysabri. -

#2) talk to you doc about reducing the frequency of ty infusions instead of outright suspending them after 2 years. That is what i am doing, i have reduced my dosing to every 6 weeks after i read an article in the rocky mountain newsletter, that ty had been designed to maintain saturation for 6 weeks. if dosing is given every 8 weeks instead it is possible there would be a week when the immune surrveilience of the brain would occur for a week every 8 weeks.

I have not had the courage to go down to 8 weeks yet but i have been doing well at 6 week infusions for a year already. thinking about asking to try 8 week infusions, but uncertain about it. feel good on 6 week infusions.

If you go to my home page i have links to articles i though relevant, one section set aside for tysabri articles...go there and you can get links to all the articlees I read on reducing dosing to possibly decrease PML risk.


still not know if it does, so its only a possibility. but as you doc warned you that tysabri might not work after a suspension, reducing the dosing to every 8 weeks it losses its saturation, might cause that also. So speeak yo your doc about the idea. Let your "nervous nelly" husband read the articles on tysabri on my homepage so he feekls more in control of the situation.

PS apart of my less than positive feelings on TYSABRI is that when i started it, i thought it meant i was gonna get a drug holiday after 2 years, my doc never promised me that, but i read it. so i thought i would get a period of time to re evaluate my ms---i feel kind of ripped off that i wasn't given that.

[lindaincolorado]

Hi Lendi, I have had 63 infusions so I am well past the 2-3 years where pml cases are highest. If I had used an immunosuppressant and was jcv+ I probably would go off Tysabri BUT I have not used an immunosuppressant and I have been jcv + and jcv- and I am so thankful to Tysabri for halting my progression that I stay on Ty. I have switched from a neuro (years ago) that wanted to take me off of Ty. I am my own advocate.

Gather the info you need to make an informed decision...

Listen to your gut
Best wishes
Linda

[0485c10]

My biggest fear of PML is the fact that I would have to stop Tysabri if i got it.

actually LL60, the stock market sites have pointed out that no one has resumed tysabri after getting PML, so it is not know whether Tysabri can be resumed after getting PML.

it could be that getting PML is like double jeopardy in the legal system---a person can only be tried once for the same crime & it might be a person can only get PML once?? You might be one of the first to prove whether this might be true. The stock market is salivating over the idea.

[Scooter24]

Also ask the dr if they plan on doing brain MRI's every 6 months to watch for changes that could indicate the development of PML. According to a dr on a TY/biogen teleconference I was involved with last week , this testing is very effective in spotting the development of PML and there have been people that it was noted and they were treated and were able to stop further development. They indicated that this was the most important test for people that meet any of the criteria for a greater chance of PML. It is standard testing at the VA for all patients that test pos for JCV.