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Old 02-23-2008, 11:57 PM
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
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Your doctor told you the truth about Tysabri being the most statistically effective drug on the market approved for RRMS. The part about the other patients who died having HIV and herpes is not true however.

The facts, as we know them, are in the following posting:

Quote:
Originally Posted by lady_express_44 View Post
You are WAY too early in this game to be considering as aggressive a treatment option as Tysabri, or multiple doses of steroids. I'm not sure where you've been getting your information up till now, but I would strongly suggest you do MUCH more research before you make any further decisions.

Tysabri has only been on the market for a couple of years as it was pulled off (after being fast-tracked) because 3 people came down with a usually fatal disease, called PML. They suspect that this very rare disease was caused by the patient's weakened immune system (they were all either on a combination therapy, or previously used strong immunosuppressants), but to this day the manufacturer has many warnings about the unknown long-term effects of this medication.

There are still reports filtering in every few months about people having rebound reactions (if pulled off the drug after just a few infusions) and the potential risk for skin cancer from this drug. In fact, someone on another board recently advised us that their neuro was aware of 4 new PML cases, yet to be announced. THIS IS JUST HEARSAY (not yet confirmed!!!), but it was the rumor-mill that revealed the last 3 cases too (just shortly after the manufacture's execs sold off boatloads of shares, THEN kindly announced the potential problem).

There are some neuro's out there that are gung-ho on Tysabri, but this treatment option is still meant to be reserved for those people who have an inadequate response, or who are unable to tolerate other approved therapies.

I have had MS 17 yrs, and before there was access to any "disease modifying drugs" (DMDs). Since there has been though, it has always been recommended that a person try one drug for a period of approximately one year, before they consider a decision on whether the medication is working for them, and/or if the side-effects outweigh the personal benefits. You are only ONE MONTH into this, and you haven't even tried the interferons (the "big guns"), so I am not sure how you could already come to the conclusion that Copaxone is not the drug for you.

I understand your neuro discussing the potential problems with the interferons (due to your history of depression), BUT that does not mean that Betaseron, Rebif or Avonex will necessarily effect you this way. There are probably 100's of thousands of people around the world that had no other choices until recently, and many of them did just fine on the interferons (even with a history of depression).

All of the drugs we have available to us only work on SOME people. Even though we have averages of "30%" or "68%" efficacy, there are some that are perhap seeing a 100% reduction in relapses, there are others that the the drugs do nothing what-so-ever for. Copaxone might seem to be the drug for one person, and Tysabri seems to work for the next.

In fact, due to the unpredictability and relapsing remitting nature of this disease, it is very hard to know if any drug is helping any one of us reduce relapses at all. Additionally, even though we might be seeing a reduction in relapses, there is still no direct correlation between this reduction and a reduction in disease progression. Hence, the disease process/disability may do EXACTLY what it was going to do, with or without these drugs.

I will answer your steroids question on the other thread . . .

I am not telling you this to scare you, or to put down Tysabri or any other drug. I have had MS and have been on these forums a LONG time, and I probably still don't have all the facts right. However, my point is that you are obviously getting very biased input from your neuro/specialist, so I feel we would be doing you a disservice if we did not advise you to do your own personal research before you jump on any bandwagon so early in the game.

Cherie

The rest of this conversation is in the attached link:

http://neurotalk.psychcentral.com/thread38842.html

The 3 people who got PML were in the trials, before the drug was brought to market. We didn't find out about the deaths until after it was fast-tracked to market, and the execs sold out their shares though.

Two of the people were in the MS trial, and both were on combination therapy with Avonex. The other person was in the Crohn's disease trial, going on at the same time, and he was not on combination therapy. His immune system was compromised, perhaps, because had been on a immune suppression drug prior to going on Tysabri.

When they warn against using this drug with a suppressed immune system, they are generally referring to suppressed as a result of another drug.

I was one who argued hard back then about ensuring there was protocol in place to warn (especially newbies) about the potential risks with this drug. Sounds like the neuros are making up their own versions of the story and not following the proper protocol of trying other drugs first though. I predicted that was going to happen . . . just like people aren't sometimes advised of the risks associated with the use of steroids or CRABs. It's to be expected, really . . .

The good news is that there are apparently quite a few people who are doing very well on Tysabri, and we have had no confirmed evidence that it is causing considerable harm to anyone since it came back to the market.

Cherie
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Last edited by lady_express_44; 02-24-2008 at 12:51 AM. Reason: Repeated same sentence
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