OK, I have read all the negative on why we, as a MS sufferers,should not do Ty. From greed to 3/3000 dying and everything inbetween.

I ask simply: if there is a slight chance of at least staying the same, never mind improving, don't we take that chance?

Living with MS stinks. Any chance,that makes sense chemically, in my eyes is worth the risk. People die from car accidents among many other things in greater number than 3 out of 3000. Get real and look at the stats. Asprin or drowning in a bathtub is more risky. Everything we do is risk. Limiting risk is prudent. I would not have taken Ty if the risk outweighed the benefit. I want my life back! For that, I will take those odds.

Pete

Hi Pete, and welcome to the board.

This is a situation of "to each, their own". Some people would be willing to take that risk, others wouldn't.

I am on a non-mainstream medication for MS, and have faired wonderfully on it. Although FDA approved, it was not intended for MS (like many of the drugs we take). This is a very mild and cheap drug, oral, proven safe over 40 yrs, with only minor short-term side effects.

This drug has taken me from constant unrelenting pain, numb hands, claw hand, barely able to walk, back-to-back attacks, an ever-increasing EDSS . . . to a VAST improvement in ALL facets of this disease. No, it's not scientifically proven to kill 3/3000, but according to anecdotal evidence, it IS working for a lot of people.

I have wondered why people wouldn't be willing to try it too . . .

In fact, I remember one time someone saying on one of the boards "I would give my arms to have some assemblence of life back". I said "why not try this drug then . . . better then losing your arms, I reckon?". She didn't even answer me.

What I am trying to say is that people have their reasons for not trying the various drug options. Personally, I haven't even tried the CRABs, yet I am now probably in better shape then most anyone else I know who has had MS for as long as I have. I was not though, two years ago!

I will use Tysabri, if it proves safe and effective in the LONG run. I will let the risk-takers have a go at it first though (and thankfully there are people out there who are willing to do this for the benefit of all ...)

Cherie

Hi Pete, Welcome to NeuroTalk.

I hope Tysabri gives you your life back. I really do!!

I pretty much Ditto what Cherie said. I am also on LDN, for the last 3.5 years.

Please come back and let us know how you are doing on Tysabri....And thank you for your pioneering for us.

I am now registered on this board as well as "this is MS" board. Whatever works. That's all I'm trying to say. We all have to take a risk doing something.
Laying back because somebody said X might happen is for the birds. As you can tell, I'm very proactive. Do something as long as it is not to harmful. The FDA is and has to be VERY conservative. Tysabri did not have to beg to be put back on the market. The #'s spoke and low and behold, it has worked for some. Isin't 1 worth it?

Pete

Biogen indeed did have to "beg" to get Tysabri back on to the market. The FDA held public hearings and invited MS patients to speak at these hearings. That is rarely done. They also pushed up the time frame by 4 months for the appeal process. There was a lot going on in the background with Tysabri and the huge amount of money at issue with its re-approval certainly didn't slow things up.

The biggest problem Tysabri had and still has is the fact that nobody knows the correlation between it and possibility of contracting PML. And when the docs can't tell the FDA, the FDA gets twitchy!

Harry

Harry, give it a break. If getting rid of polio waited to make SURE it was safe, we'd still be with it. As far as money, isin't 1 QoL improvement worth the money? They couldn't approve this(Ty) fast enough. I have read your doubts and you offer nothing more than "Let's see." Live with this, not your wife, but you.

The same thing I would tell politicians about embryonic stem cells. If you are against it, great, but don't use them if they work and you have something go wrong.

Pete

It's just Harry's opinion, Pete. There are good reasons and room, for both of your opinions. I understand your reasonings for the choice you made for yourself.

My choice is to stay on LDN for the time being. I don't think Tysabri is all it's cracked up to be and one of the sides could be PML. Simple as that. In the meantime, my MS isn't going anywhere, and neither is yours.

I hope it works for you and gives you a better QOL. At this point, that's what it's all about. If I were younger and had a more aggressive type of MS, I would , maybe, make the same informed decision you have made.

It's all about the risk vs benefit Pete. While some people will take whatever risk is involved with Tysabri, others will not. This becomes an individual decision.

But please don't compare the polio vaccine back in those days with Tysabri of today. What happened with Tysabri and all of the frustration and problems that we are seeing is the result of Biogen/Elan's rush to capitalize on big time revenue. The medical safeguards of today's science are far superior to what they had back in the 50's but unfortunately they weren't used with Tysabri to the extent they could have been.

I continue to read on other MS sites the severe reactions that some Tysabri users are experiencing. These patients used Tysabri during the first round before the drug was pulled. They apparently produced antibodies to the drug and now when they are trying to go back to using Tysabri, the problems are surfacing. They usually can't ever use the drug again and are frustrated more than ever. A lot of this could have been avoided if Biogen took the time to follow their original plan for the trials. You now have to wonder what else was "skimmed over" and not checked out properly. Taking a risk with your health and medication is one thing....taking a risk without being given the proper information is another and something that MS patients don't need to take on.

Harry

OK, I get it now. I went to MSW and read a few of your posts. Nuff said.

I do enjoy your posts, Rex.

You get what?