Re: my thoughts about Tysabri RE: Studies Find Withdrawn MS Drug Effective

[Guest guest]

Hi Sharon,

I think that you know what I think. The drugs unfortunately are hopeful experiments. The only drug that has been proven to help during an exacerbation is Solumedtrol ( bad spelling ). At least in those circumstances, it helps. However, needless to say, it too has severe side effects but at least it has helped many. I personally am anti drug as you know.

--Regards, Tom

-------------- Original message --------------

From the Article I just sent to the group:

Studies Find Withdrawn MS Drug Effective

"The researchers have received fees or support from the makers of Tysabri and include Biogen Idec employees.'

'Dr. Lawrence Steinman of Stanford University School of Medicine, who helped develop Tysabri, said he would be reluctant to use it now, although he thinks the FDA should approve its sale with stern warnings.

If I had any alternatives, I would not use it," he said. "MS is a bad disease, but it's not like lung cancer or a disease where you'd take lethal risks to treat it."

Also in the article it says the odds of contracting PML while taking Tysabri are "only" 1 in 1000. I think those are high odds, but they act like it isn't.

Anyway I have been thinking of Dr. Steinman's comments and I feel like really putting on my brakes over trying this treatment. I don't like their odds for PML. When I saw my "Wonderful Neuro" again after many years of not being able to see him due to my insurance change---he didn't mention Tysabri as an option. Instead he said he was 'thinking copaxone most of the time now'.

What do you all think????

hugs)

Sharon

Sharon (MSersLife creator/owner)

“One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge

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[Guest guest]

Hi Sharon ~ Well, I'll tell you what I think...if the man who made the drug states, "I would be reluctant to use it", then so would I. I have PPMS and none of the modifying drugs were actually made for mine. I was on Avonex for a year, then was taken off & now am going to be starting Betaseron (I have had 3 MD.'s and 2 Neurologists tell me that even though Betaseron is one of the older ones, it is the most aggressive and all told me that it would be my best bet.) Anyway, as far as the Tysabri goes, you're right - the odds aren't all that great. But I understand the drug is very effective - despite what happened. I guess everyone at least has a choice - which is a blessing in & of itself - years ago there were no choices. I guess I feel blessed ~ that if I have to deal with this, I do have help. I hope this finds you feeling well & enjoying this lovely day - it's beautiful today in San . Hugs -debbie>> > From the Article I just sent to the group:> > Studies Find Withdrawn MS Drug Effective > "The researchers have received fees or support from the makers of Tysabri and include Biogen Idec employees.'> > 'Dr. Lawrence Steinman of Stanford University School of Medicine, who helped develop Tysabri, said he would be reluctant to use it now, although he thinks the FDA should approve its sale with stern warnings. If I had any alternatives, I would not use it," he said. "MS is a bad disease, but it's not like lung cancer or a disease where you'd take lethal risks to treat it." > > Also in the article it says the odds of contracting PML while taking Tysabri are "only" 1 in 1000. I think those are high odds, but they act like it isn't. > > Anyway I have been thinking of Dr. Steinman's comments and I feel like really putting on my brakes over trying this treatment. I don't like their odds for PML. When I saw my "Wonderful Neuro" again after many years of not being able to see him due to my insurance change---he didn't mention Tysabri as an option. Instead he said he was 'thinking copaxone most of the time now'. > > What do you all think????> > hugs)> Sharon> > > > > > Sharon (MSersLife creator/owner) > "One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge> > > > > ---------------------------------> Yahoo! Mail> Bring photos to life! New PhotoMail makes sharing a breeze.>