my neuro got TOUCH certified last week and my MRI is tomorrow. after a 6 mo wait i see light at the end of a long dark tunnel at last....i have failed all the other drugs and take Tysabri willingly and with the hope that it will help.

the chance of problems exists, but my chance of deteriorating is far higher. if it helps me i will be thrilled. if it only stops progression, i will be satisfied. if it does neither, at least i will know that i tried.

at the moment sitting around doing nothing is not an option.

those of you who consistently criticize the drug companies are not going to change anything. take your arguments to them. this is a place for those of us who need these drugs to come and share.

i just hate the controversy it creates.

Hi, Linda. I appreciate your choice, especially since you seem to have all the facts. But, a lot of PwMS follow their Doc's advise without knowing all the possible dangers with this drug.

When we share about these matters, don't you think we should share the Pros as well as the Cons. I think a lot about my Family of PwMS here and do not like what I see, when the marketing tactics of Biogen, (In this case) are outweighing the the whole truth.

I was just as excited as everyone else, when Tysabri first came to market. I believed all the hype too and looked forward to trying it.

When it was pulled from market, I began to take a closer look and found out so much more that we not only were not told, but was actually withheld from public view by both Biogen and the FDA.

I still think that Tysabri has a potential to help PwMS, but some may pay the consequences and that scares me. Not for me, because I choose not to take a chance, but for those who may suffer in the future, from the possible side effects of T.

I wish you nothing but success with T, Linda. I truely hope its a miracle drug for you and others.

Please come back and let us know how it goes. I, for one, would be very pleased if none of my fears ever come to pass.

Hugs,

Linda,

I think that most of us here know very well that we aren't going to change the way that big pharma operates. That's not what we are trying to do.

What we are doing is trying to inform the forum participants about all aspects of the MS drugs, Tysabri included. If one were to only read what the drug companies tell us, you would only ever get one side of the story and that would be the "everything is perfect" side. You only have to listen to the news every day to discover about all the problems that many drugs have caused in the past couple of years.

There is nothing better than being well informed and being able to make your decision of what medication to use based on as much knowledge as possible. Yes at times there is going to be controversy but that will always happen when you have differences of opinion.

Harry

I am not here to argue, so please don't misunderstand my point.

yes, we do need to be informed. that is our job as patients. the job of the drug companies is to try to find new drugs. pretty basic....we criticize them for that!!!

yes, they are profit oriented. what if they gave up on MS and worked on other diseases? then we'd really have ourselves in an uproar.

do you suppose they have Monday morning meetings to look at death statistics and profit reports.

I am informed and choose Tysabri. I want everybody to have choices about what they take.

this is NOT about the drug companies is it? if so, i'm in the wrong place. I thot it was about Tysabri and getting help.....I have PRMS and nowhere else to turn. I'm grateful it is now available.

only my opinion.

Hi there,, been keeping tabs on this thread,,, and some of the talk spooks me, since I am on the 4th infusion of Tysabri, but then I think, I didn't really have a choice in the matter,, since the other drugs didn't work on me,, so far so good, I am not here to sway people, everyone is different,, I hear people who felt "human" again after one infusion,, no not me, in fact of the matter, I think I get a little worse,, my bad days definetly out number the good ones,, but I am hanging in there tough,
I did take a leap of faith,,

I did have a hand and finger problem,{left hand} after my infusion,, they say MS related, { couldn't move either,, had a MRI, going to PT now} my therapist says it sounds like a TIA..

later then

Peg

And your opinion is well taken, Linda. You're right, it's not about the drug companies, it's all about us and our care. I agree that we need these drug companies pushing for new meds for us.

Sometimes I am angry at why it takes so darn long for promising Meds to come to market. The process is so slow and we are not getting any better or any younger.

I only wish that they could come up with more natural remedies, to make us better, instead of all these chemicals, which compromise our Immune Systems.

The Scientists are coming up with new theories, about what causes our myelin to be attacked, every day, which could lead to new, more efficient Meds.

I am thankful when big pharma grabs onto these theories and goes forward with it. Their motivation makes no difference to me, but our FDA should insist on full side effect/dangers disclosure. I don't like it coming out in dribs and drabs after the fact.

Good luck, Linda.

Linda,

The job of drug companies is to discover and develop new drugs that will make them a lot of money....that's why they are in business. And there are a lot of good drug companies out there.

What we criticize here (and other MS forums) are drug companies that develop medications that haven't been thoroughly tested enough before being made available to the patients that will use them. Without going into detail, that is what happened to Tysabri when it was quickly approved, subsequently pulled from the market and then re-approved under some very strict conditions.

I don't think anyone is saying that patients shouldn't have the choice of using whatever drug they feel is right for them....as long as the patients have ALL the proper information before making that choice.

Believe me that won't happen....as long as there is the possibility of making a lot of money from a MS drug, big pharma will always be around!

And there is absolutely nothing wrong with that. But the vast majority of MS patients who choose to use Tysabri don't have the availability of obtaining this information like those who use the internet. If they made their decision solely based on what big pharma tells them or their docs, then that can be a problem. Do you think that Biogen would tell prospective customers that a number of patients died from infections during the trials? This kind of information had to be sought out and obtained by the press through the Freedom of Information Act. The lawyers of Anita Smith's family (patient that died from PML) had to go to court and force Biogen to make available the data of the trials so the lawyers could review the trial data! This is why we criticize Biogen and other drug companies who act like this.

It's all part and parcel without the two being separated. You aren't in the wrong place..you are attempting to obtain info to perhaps help you make a decision on what medication to take. What most here are doing is providing you with as much information as possible and it is up to you to make that final decision.

Harry

Exactly!

The "Devil's Advocate" is a rotten job, but someone has to do it..

Hi Peg, I am so sorry that Ty doesn't seem to be working it's miracle on you....Damn.....

A TIA/small stroke? Wow! I hope not. My DH had many of those. Do you have any slurring of speech or shaking...left side weakness? Sometimes Neuros misDX TIAs when it is actually a MS exacerbation. That's how my DD was DX with MS. They thought, at the hospital that it was a small stroke and then she was DX with MS.

Thinking of you and hugging you tight through this set back...((((((((((Peg))))))))))

Peg,

None of us want to "spook" anyone when it comes to providing as much info as possible about Tysabri or any other MS medication. But when providing this information you have to provide as much as you can, whether it be good or "not so good". That's the only way a person can determine what decision is best for him/her.

I'm sorry to hear that the Tysabri doesn't appear to be helping you at this time. Perhaps a little more time may change things. Like all drugs for MS patients, some help and others don't. MS patients have reacted differently to medications out there for years and I doubt Tysabri will be any different. Let's hope things turn around for you soon.

Take care.

Harry