I find this fascinating. I remember hearing about the increase in lesion bulletin - but kinda just kept moving on - and said, "well - all the more reason to stay on Tysabri if it works for me..."... - note: i havent started it yet - I am waiting for the TOUCH people to get their acts together.

Anyhow - I find this interesting:



Their findings show that the total group of participants developed more than three times as many lesions in the 15-month period after discontinuing the drug than before they started taking it. This increase was mainly driven by those who took the drug for an average of two months, who experienced five times as many brain lesions after stopping the drug. Clinical relapses did not increase following suspension of the drug.




If you REALLY read that part of the statement (that is - If I am reading it correctly - but you know, I have holes in my brain, so some days I'm more "off" than not!) - you see that the people MOST affected were the ones who ONLY took Tysabri for TWO months! - "this increase was mainly driven by those who took the drug for an average of two months" -

Also - as RW said - this isn't scientific - and we don't know cause-and-effect here - and as MS is a DEGENERATIVE disease - it makes sense that after a year of suspending a treatment that more lesions were found - especially if we do not know if a new treatment was started after Ty stopped. We also don't know if by the time Ty was stopped if any of the people tested had changed classification from RRMS to something more progressive, that could account for the quicker increase in lesions.

EVEN IF we can say that they are rebound lesions - then wouldn't we also have to argue that Ty prevented them from forming while on treatment - and so that those participants who were on Ty for three years - did not have an increase in lesions during treatment - and as we've heard reports from many people on Ty - one might be led to believe that in the years they were on Ty - that they had QUALITY of life - the Ty helped grant them that. ISN'T THAT THE POINT OF THE TREATMENT - at this point in time - as so far - no one has made any claim to be a cure for MS?

Okay, so I admit - it does kinda suck that the increase of lesions after stopping treatment is so large and it is a little alarming! I am a supporter of the med - but I'm also not an ignoramus! LOL Will it stop me from taking Ty? No, probably not. If Ty works for me - would it make me very upset if they pull it from the market? YOU BET. Then we'd have to show the FDA that pulling it from the market does more harm than good.

Alright, time for me to call TOUCH and see if they're getting my paperwork in order.

Cherie - I am glad you posted the article - I believe in INFORMED CONSENT - buyer beware - know what you are getting into before you get in!

~Keri

RedP,

You are talking about a drug here that plays big time with one's immune system. It prevents certain parts of one's immune cells from crossing the blood-brain barrier and doing what they normally do.

Now, for whatever reason, the patient has to stop taking Tysabri because the nasty side-effects can become life threatening. Now these immune system cells, after being prevented from doing their thing for a long period of time, start to go into the brain again. In reported cases, some patients are getting a huge increase in the number of brain lesions! All the MS drug trials hang their claim to fame that they reduce the number of these lesions. Now the drug they can't take anymore could possibly cause their MS to speed up tremendously.

First it was stopping the drug resulting a large increase in lesions, then it was problems with melanoma and moles and now it's possible severe liver damage happening very quickly. Do you not think that Biogen may have rushed this drug out the door a bit too quickly??!!

Here is a company (Biogen/Elan) that along with the FDA, rushed the approval process by one year. They combined it with Avonex in a trial BEFORE the drug was approved on its own. They published a part of their marketing plan on the internet, stating how many $ billions they would make and how huge a chunk of the MS drug market they would gain BEFORE the drug got approved. I just can't trust these people to be telling us what else they don't want us to know about Tysabri.

Harry

I think that you have to weigh the pros and cons with tysabri just as you do with any drug therapy. In my case I am allergic to interferons and had too many bad reactions to copaxone. (5 serious IPIRs in 4 1/2 months) So I decided to go on tysabri after alot of deliberation. I did not make this decision blindly. It is true that no one know the long term side effects of this drug. That is true of all new drug therapies. So I could wait a few more years, take nothing, and have my MS progress. Or I could try to get into a study where I may be taking a placebo and the drug being studied may also have potential problems associated with it. I know that tysabri is not the "silver bullet" but I
am willing to take the risk. Quality of life is more important to me. Oh, I have scheduled an appointment with a dermatologist for a full body mole check and I am planning to ask my neuro about bloodwork at my 4th tysabri appointment on Wednesday. I also am experiencing less fatigue and I am using my cane less.