(National MS Society Website) Tysabri approved

Guest · Posted: Mon Jun 05, 2006 8:43 pm Post subject:

This is great news! Thanks for posting this.

Snoopy · Joined: 23 May 2006 Posts: 195

I expected the FDA to approve Tysabri.

I have no desire to try Tysabri at this point....I feel it's too much of a risk.

For those that are not aware...I have never used any of the disease modifying drugs, I don't believe they work as well as we are lead to believe.

I know many feel these drugs are the only hope we have and I respect the choice of those that use them.

IMHO....Tysabri is a very big risk and for me I am choosing to wait.....I wish those that will be using Tysabri all the best and really hope it helps you.

agate · Posted: Thu Jun 08, 2006 11:15 pm Post subject:

Snoopy, I agree with you. More power to anyone with the courage to try Tysabri, but I won't be trying it.

After 3 years on Avonex, I haven't opted to take any other disease-modifying drug for MS.

I can't help thinking about all of the great new drugs that came along in my lifetime, and then years later it turned out that they were causing some other horrible problem to develop in many of the people who took the drugs.

Who knows what type of horrific disease is going to show up 15 years down the pike among persons now taking one of the ABCRs? There are many worse diseases than MS floating around.

I know this is a very pessimistic view, but I'm just a gloomy Gladys. If I were bedridden or had totally lost the power to speak, I might feel entirely differently. I'd probably grasp at any straw that came my way.

Guest · Posted: Fri Jul 21, 2006 9:17 am Post subject:

agate · Posted: Fri Jul 21, 2006 10:54 am Post subject:

Joy, I don't know if you recall Thalidomide--? It was supposed to be a great drug for curing morning sickness in pregnant women, and so a lot of women took it trustingly. Then a lot of women began giving birth to babies with no arms and/or legs, and it was Thalidomide that caused that to happen.

Poof! There went Thalidomide--at least I think it's off the market. I haven't heard of it in years except in connection with those disastrous births.

There have been other cases of "wonderful" new drugs that have turned out to cause unexpected problems for people--sometimes really major problems.

But I had to stop Avonex after 3 years of it because I passed out one night (a few hours after the weekly shot) and fell. The neuro thought I should avoid all of the interferons from then on.

Copaxone is still a possibility, but I keep sitting on the fence about it.

On the one hand, I SHOULD do whatever I can to slow down the MS process.

On the other hand, none of the ABCRs have been shown to be effective in SPMS, which is what I have.
And I've had MS for so long--they don't really know much about how these drugs affect people my age.

AND there are my doubts about any new medicines. So as of now it's no Copaxone.

.
_________________
MS diagnosed 1980.

Avonex 2002-2005. Copaxone 2007-2010.

Guest · Posted: Fri Jul 21, 2006 11:37 am Post subject:

agate,

I SO do understand what you're saying here. I've sat on my fence so long it has a butt groove. :)

Yes I do remember Thalidomide. It was tragic. Let's hope none of the ABCRs fit into that scenerio.

They like to tout (sp) Copaxone as SE free but it isn't. I keep up with the new stuff they add to the prescribing information and the list grows longer and longer. I could list a few here and I may later.

((agate)) I so hope you continue to do well.
XOXOX
Joy

Matt · Joined: 21 May 2006 Posts: 961

Have you cosidered methotrexate or azathioprine, Agate? There is some evidence at least that methotrexate might help in progressive MS. But, there isn't much evidence for anything working in people who have been SPMS for years.

Of course, some people who take methotrexate for years get crihosis of the liver. It requires monitoring. There are a lot of people who have taken it for ages for Rheumatoid arthritis. For the most part, it seems safe.

Most upsettingly, people who can't speak anymore can't take any disease modifying treatments, because they are already at such a risk of pneumonia without immunosuppression. This doesn't apply to you, of course. I think you mentioned it? Or maybe I'm confused?

agate · Posted: Fri Jul 21, 2006 1:40 pm Post subject:

Matt, I'll look into methotrexate and azathioprine.

I'm not the one who mentioned that people who have lost their power of speech can't take disease-modifying treatments. I didn't know that, in fact, until I read your post, but it does make sense--about the possibility of pneumonia.

I don't recall reading that when I read all of the literature Biogen puts out about Avonex, but that doesn't mean it isn't a real danger.

My voice is hanging on but not doing very well lately. At least it's still there, a little bit, most of the time. blah5

Matt · Joined: 21 May 2006 Posts: 961