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[Mynamegoeshere1]

I was diagnosed in October 2011 and started on copaxone. I had a bad reaction and had to get off of it in December. I had a huge relapse and started Betaseron in January. Same thing now......having bad reactions and my doc wants to start me on Tsybari. I'm a bit terrified at the fact you can drop dead from it. Any advice? I had him run the antibody test on me today. I'm so stressed about life in general right now! HELP!

[ru4cats]

I was diagnosed two years ago this coming June, and the only drug I've been on is Ty. A few people have reactions to it, but I've never had a reaction, and I Ty.

Assuming no reaction, you're good for at least 12 infusions and up to 24 without PML fears if JC+, and the risk is 1/35,000 forever if JC- which I am. BG12 is do out by the end of the year, and 12 months on Ty would get to its release.

Lots of good info on Ty in this thread; just read around. Good luck with your decision.

[MSSINCE09]

Hello Mynamegoeshere!

I am from texas og as well. A little town outside Odessa Midland area called crane.

I am on tysabri. I was diagnosed july 09 and was started on rebif. I could not take the side effects, so I was switched to Avonex. I could barely stand the side effects but it wasnt working either I was still having a flare every 2 months.

So I started Tysabri, last tuesday I had my 19th infusion. I have tested negative for jcv and my last mri showed improvement in one lesion and no other lesions.

I still have symptoms every day from the damage that was caused before, but I have gone from having a flare every 2 months to the last time I went 5 and a half months.

It is your own personal decision. All I can tell you is I did it and am glad I did.

Good luck to you

Marie

[Redwings]

Originally Posted by Mynamegoeshere1

... my doc wants to start me on Tsybari. I'm a bit terrified at the fact you can drop dead from it.

Hi Mynamegoeshere:
There's a wealth of information about Tysabri available, both here at MSWorld and on the Internet. And the truth is that people don't "drop dead" from PML. The fact that you're not doing your homework and letting your imagination take over only [I]hurts[/I] you. Even when used in jest, terms like "drop dead," when they're inaccurate, [I]hurt[/I] you. No wonder you're terrified! You alone are responsible for what terms you use and pay attention to. There are enough things in life to be afraid of without letting creations from your imagination be among them.

The bad news it that it's true that people die from PML. And it's true that Tysabri seems to allow people to develop PML perhaps more often than with other medications. And it's true that PML can leave people severely disabled.

But if there's better news, it's that people don't "drop dead" from PML. There are signs and symptoms that occur well in advance of death that are evident if people pay attention to them. Also, the available information indicates that, since the reintroduction of Tysabn to the marketplace, there have been [I]no[/I] cases of PML in MS patients within the first year of treatment. Isn't that better than terms/ideas used mistakenly or in jest?

I had only one infusion of Tysabri, back in 2005, literally about a week before it got pulled from the marketplace. And, as it turned out later that year, I don't have MS (I have a different disease). But one of the things I learned from my odyssey is to look at [I]reality[/I], not imagination and fear. Fear is your tip-off that you need to look at and act on something [I]else[/I], not the fear itself. Information itself shouldn't "terrify" anyone.

You asked for advice. My best advice is to make decisions from information and strength, not from misinformation, speculation and fear. Being "stressed about life in general" isn't a good basis from which to make decisions. Humans are far more than just emotions. Emotions (including fear) should be [I]part of[/I] decision making, not the sole criterion. That means doing your homework and getting professional help, if necessary, to manage your emotions and fear. Get the results of your JCV test and then decide what to do. That's my best advice.

[Mynamegoeshere1]

Thank you Redwings. I think I've just heard a lot of bad stuff about the medication. I also have just found out that my father has kidney cancer and I'm losing my job and benefits. I'm just stressed really bad and letting emotions take over I guess. Thanks for putting things into perspective.

[Cate Power]

I think you're fortunate to get started on the best treatment there is so early.

[LL60]

Redwings - I liked how you put things. If you stop and think about things too much, you'd never get out of bed. And THAT is a hard lesson to finally learn. Not to overthink, yet still be informed.

Mynamegoeshere1 - wow, you do have a lot going on right now. I hope that you are seeing a therapist to help with things, or at least have someone you can vent to on a daily basis. Or just keep posting here too.

You can get help with your MS meds. If your doctor's office can't help, call your local MS Society. And people here know a lot too.

Our benifits changed last year and it has been a real eye opener. I will never take health care benifits for granted again. I have some, but pay high prices for everything from simple blood test to MRI's. But just shopping around I have found huge differences in price of things. Like going from over $1800 for an MRI to finding a place for "only" $550, and who do a better job and give me the CD that day and the results in writing in about a week. I also went outside my plan to emerency care when I woke up with no hearing in one ear. If I had waited until I went though all the referral system my insurance has I would have pernament hearing loss. Because I could start treatment that day I got about 70% of it back. It just takes being on top of things and not assuming you are trapped into something.

Guess I vented a little there. Really, I did just take my insurance for granted and paid my little co pay and never gave it much thought. Now it cost me $300 just for my physical each year. And $270 to see my neuro. And when she said she wanted me to come in every 3 months, I said no way. But it's better than no insurance. And I try a little harder to stay healthy.

I am so sorry about your dad. I hope he has a good outcome.

You take care of yourself. Let us know how you are doing.