Posted on 07/22/2006 5:22:19 PM PDT by annie laurie
Thanks for the info! I'll bookmark the link and pass it on to my daughter's friend.
Thanks for bringing this to my attention. I'm glad to hear that you've been helped by this.
Please FReepmail me if you would like to be added to, or removed from, the Multiple Sclerosis ping list...
I wish it did. That would then be in effect a cure for not just MS but many diseases and disorders such as Transverse Myelitis where myelin is destroyed..
ping
Sounds good to me.
Thanks for the ping. What I'm having a hard time understanding is that they are talking about stopping relapses in a progressive/aggressive form of the disease.
Must be talking about PRMS, as RRMS, SPMS, and PPMS wouldn't fit those criteria.
PRMS is my diagnosis.
I'm RRMS, and have relapses, but most RRMS aren't considered to have a "poor prognosis" and I knew they don't usually recommend chemo drugs unless you've failed on the CRAB drugs. (I use Betaseron and seem to do well on it.)
Up until now, have they recommended any other treatment for PRMS?
I sure do hope this proves out.
There is so much promise, we really need this progress to keep on coming. Even if it does not prove to be what it appears, there will be increased knowledge. That increased knowledge will help point the way for even better progress.
Here is a different perspective on this story:
http://articles.moneycentral.msn.com/Investing/StrategyLab/Rnd14/P1/AllStarTeamJournal20060727.aspx
I'm having to wait until October before I begin my switch from Rebif to Tysabri. My neurologist says that he recommends this for PRMS (I've since moved to Cleveland, OH, from Dallas since my initial diagnosis of MS). I don't know how Tysabri affects RRMS.
RX, good link. Thanx.
Tysabri has been recommended for "relapsing" forms, so it can be used for RRMS. However, prescription guidelines, and I imagine insurance guidelines, say you must have failed on the current disease modifying drugs...at least that is how they're starting the reintroduction.
I do fine on Betaseron, so I know I wouldn't qualify.
Best of luck to you. I've heard some amazing things from folks who took Tysabri during the trials.
That's really interesting. I'm SHOCKED that big pharmaceuticals would be playing those games...just kidding...I saw "The Fugitive", LOL.
Anyhoo, I'm glad Tysabri will be available for those who don't have success with the other therapies.
It will be interesting to see how it plays out though, IMHO.
I'm just wondering how exacerbations will be handled. From what I've read, if you have worsening symptoms (which is so normal in relapsing MS) they'll want to check for PML and get an MRI. After all, the lady who died from PML was thought to just have an exacerbation when in fact she was developing PML.
How many MRI's are the insurance companies willing to pay for in a year, to monitor a drug? Will this further hamper their reluctance to pay for the med? And they say they don't believe a short course of steroids will hurt during an exacerbation or increase the risk of PML...but they don't really know? So many unanswered questions. I think it's definitely worth the "risk" because the number of incidents were so low during the trials.
Another thing that might limit TY is when people start getting hit with their co-pays for the treatment. There were reports of costs ranging from $3,000 to $7000 for one infusion (depending on the infusion center and the mark-up of the drug.) If you have group insurance, no problem, you'll have a non-formulary fee for the drug, and the infusion will be covered by a regular co-pay. But if you have traditional 80/20 insurance, that'll be a chunk to pay every month.
I'll be following the drug and it's results. I'm sure just like any of the treatments some people will do well, others will have issues.
Like you, I know folks who experienced Tysabri firsthand. Also, I had the opportunity to watch the webcast of the FDA advisory panel meeting last March during which the panel unanimously recommended Tysabri be brought back.
If anyone has any doubts about this drug's effectiveness, I suggest they read the transcripts from the dozens of Tysabri patients who testified at that meeting. ( The meeting had to be extended an extra day to accomodate the many who wanted to testify.)
Here's the PDF file from that day's meeting. Patient testimony starts on page 232.
http://www.fda.gov/ohrms/dockets/ac/06/transcripts/2006-4208T1.pdf
Thanks for the MS ping. My neurologist is continually amazed at how "up" on the new developments we are.
We seem to be on the verge of some truly historic medical breakthroughs these days.
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