OK, I give up Harry. I've never seen a post of yours not jumping all over big drug companies and how evil they are. well, just who is going to do all the work and how are they going to test the drugs and get them approved? you tell us the alternative.

....and here i am in the very arguement I sought to avoid.....

the other drugs failed me, i need this drug. i am informed and make that choice to take what the big evil drug company has as the newest treatment.

what do you suggest i do otherwise???

i am open to suggestion. I shall check back after my MRI this afternoon.

Linda

Peg - are you going to have another infusion? That's scary. Hope it's not related to the T.

I think medicine consumers NEED to be aware because when we hear that the FDA is under funded and has the same doctors on their payroll as are on the payrolls of the drug companies.. well, it feels like we NEED another watchdog. Sometimes that has to be us if we don't feel that anyone else is taking our best interests to heart.

The pharmaceutical companies aren't making our best interests as their #1 priority. Making money is. They didn't try to fast track Tysabri to get it to 'the people' faster, they did it to make money faster.

The bottom line is that pharmaceutical companies are in it for the money. WE are in it to get the best safest treatment for ourselves. Sometimes those objectives conflict. Sometimes the pharmaceutical companies are willing to take greater risks with our health in order to make a profit than we would be willing to take ourselves for a meager potential benefit. The risk-benefit analysis WE do versus the one the pharmaceutical companies do is totally different... ours doesn't involve profit. And with the concerns about the FDA, well... we have to be even more vigilant ourselves in assessing what the risks are versus what the REAL benefits might be.

Desperation skews ability to realistically assess benefits versus risks. After all, a theoretical risk of death is a LOT different than actually dying a very difficult, debilitating death from a medication. I don't know if we can really appreciate the risk when we can only think of it in terms of being theoretical. Especially when the probability of continued progression IS very real to us. I think the realness of the progression clouds our ability to properly assess what a theoretic risk of DYING really means. It may well be that if BOTH were theoretical, risk of dying from med versus risk of disability progression, our decisions might be very different because we could be unemotional about both decisions. After all, death is permanent, whereas disability just means life adjustments. Would someone risk ending their life in order to lessen disability progression?

I'm not saying that ANY life is better than death, but it's just hard to make an objective risk-benefit analysis when our emotions are involved with the very real experience of disability and disease progression. And since we experience disability progression, we become very emotional about it, just like the family of the dead woman who took Tysabri has a very emotional and overwhelming feeling about the risk of death not being worth it. It's all your perspective.

I am worried that our perspective can cloud our better judgment, which is very difficult to be objective about anyway since we have an emotional reaction to our PRESENT circumstances but cannot have the same level of reaction to dying from a medication, just because we don't have that experience. Given that the woman's family is suing the drug company, I'm thinking that when THEY went through the dying from Ty, they now in retrospect believe that it wasn't a risk worth taking. Maybe we should try to put ourselves in their shoes because they have a perspective very much valuable to our own risk-benefit analysis. It turns the theoretical risk of death closer to reality, and balancing THAT against an ACCURATE, REALISTIC assessment of what the drug might do is important. After all, it's not really the drug company that is giving us the accurate, realistic assessment of the drug's benefit. They are giving us the best possible view. And yet from our own learning, we discover that it's not that much better than the ABCR's, which really aren't very good at all.

So I appreciate the discussions because I want ALL information in order to help inform myself as much as possible. I WANT to hear about the people who are benefiting, and I want to hear from those who aren't or who get sicker. I don't want to make a decision based on the drug company's 'hype' but I want to have the cold hard facts and numbers. I want the WHOLE picture. It oftentimes takes an independent reviewer or fora like these to tease that information out.

Hey, wait a minute Linda...you obviously didn't read my previous post...

Why is it that when someone points out the deficiencies of a drug company, it is calling them "evil"? There are good drug companies and "not so good" drug companies. I just happen to think that Biogen isn't in the "good" category and have given examples of why I have that opinion. Merck is another one that isn't on my favorite list because of how they hid the dangers of Vioxx and so is Parker Davis for how they deliberately and falsely misrepresented Neurontin. They did such a "snow job" on Neurontin that they are up on criminal charges for that fiasco.

I have nothing against a drug company developing a drug and bringing it to market...as long as they are ethical in how they do it. We know that not all of them are and usually they get caught and pay the price.


Why are you viewing this as an "argument"? We just happen to have a difference of opinion and are expressing our own views...geez, I'm not looking at this in a confrontational way at all.

I am not in any way questioning your requirement to try Tysabri and have stated that. The drug is available and those who want to try it have the opportunity to do so as long as their doc follows the established rules. But the whole introduction of Tysabri could have been handled SO much better if Biogen had only followed the normal protocol. They didn't, rushed it, caused thousands of MS patients needless grief and are making its choice far more difficult now than was ever intended. That's why I don't have any respect for the company.

Harry

Very well said, Wannabe.

Thank you for your post.

hey lauren

I am new to all of this, my doctor is giving me the choice of copaxon or tysabri. and i have no idea what to do, i dont know this drugs as i am/was on betaseron.

how is it going for you

thanks

Hi CJohnson,

Thank you so much for your comment...I don't post here very often as I never really received a very warm welcome nor much support with my Tysabri infusions as I was one of the first MS patients back on Tysabri therapy in 2006. Furthermore, much misinformation about Tysabri is posted on this site. Perhaps you will receive a better and more supportive reception here than I ever did.

I actually post on many other MS sites elsewhere on the web, where I am supported in my choice of therapy, and I support others with their choice of therapy. I am also co-owner of a MS Support Group on a different site. Don't get me wrong though, there are a few members here that are very nice and supportive.

In answer to your question, Tysabri has kept my MS stable and I have not had a relapse nor any disease progression in over 17 months. I am scheduled for my 19th Tysabri infusion next week, and I am looking forward to it very much. (Wooohooo!) I don't have any side effects whatsoever from Tysabri, and I love the convenience of an infusion once every 28 days.

Tysabri's superior efficacy of 67% in preventing further relapses, their accumulating disabilities, and slowing the disease process down far outweighs the efficacy of Copaxone which is 29%, plus you have to inject yourself daily with Copaxone and it takes approximately 6 months to a year for Copaxone to start working in the body, that's if it does work for you. To be fair, Copaxone does work great for some people. It didn't work for me though, nor did Avonex (which is an interferon [beta-1a], much like Betaseron is [beta-1b]).

Tysabri started working for me approximately 2 weeks after my very first infusion, and gives me hope for improvements each time I have been infusion.

Please feel free to visit my blog, which is also my Tysabri Diary... also, please feel free to contact me directly if you would like further Tysabri information which is accurate.

I support you in whichever medication you choose to fight your MS. Good luck to you, and all my best...

Lauren

Welcome to Neurotalk Lauren. Thanks for posting such good information and it's nice to see you!

Hello Lauren, I'm glad you stopped in. Your more than welcome at NeuroTalk and have always been, at least in my opinion

hi lauren. lots has changed since you joined. you only posted a few times.

as you can see.....the ms forum has grown is a wonderful way.

as we know, not every drug works for everyone. but we would like all to post their experiences.

also, if you can post the links to the research data, that would be great. it really helps for all to have the sources, so they can make informed choices as to their own treatments.

i hope you give nt a second chance. i think it had been over a year since you posted.

btw...i just want to remind everyone....that this is an old thread that was bumped up by a new member to ask on original poster on the thread a question.


the last post that had been made was 12/06

we do have Tysabri Sticky thread to continue all discussions.

here is the link:

http://neurotalk.psychcentral.com/thread37891.html