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Posted: Sun Jun 29, 2008 5:47 pm
by Lyon
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Posted: Sat Jul 05, 2008 2:16 pm
by av8rgirl
Hooray for Jane. I don't think I could have said it any better. She knows what I went through with the Tysabri issue - the testifying, the hits I took afterwards etc...and then all the fallout only to find out now 2+ years later than no MS patients have died of PML while on Tysabri monotherapy. ...gee...isn't that the way the press goes...
Anyway, I am not going to beat that dead horse anymore.
I have a great Neuro where I live and she treat the patient which has been great.
I am lucky to be in the Tovaxin trial. I just hope to get into the extension study...I should know in a couple of weeks.
Sometimes our docs tend to focus on the negatives to keep US alert forgetting that they are not our only source of information. Too much negative information out there and we get overloaded and that's not what we need. We need our docs to reassure us that we are doing the right thing, but not being stupid about our decisions. There is danger in everything. Shoot, Zantac almost killed me and it's supposedly the safest drug on the market! Who knew!
Never take anything for granted, be educated but don't let the doctor be the end all for information.
Posted: Sat Jul 05, 2008 2:22 pm
by patrickm
av8rgirl wrote:
I am lucky to be in the Tovaxin trial. I just hope to get into the extension study...I should know in a couple of weeks.
Just to clarify, if you were in the first year and you want, you're in for the extension. The only thing is whether you get vaccine now, or you wait 3 months and go in for a recheck, but either way, you are still in the extension. At least that's my understanding.
Posted: Sat Jul 05, 2008 2:34 pm
by av8rgirl
patrickm wrote:av8rgirl wrote:
I am lucky to be in the Tovaxin trial. I just hope to get into the extension study...I should know in a couple of weeks.
Just to clarify, if you were in the first year and you want, you're in for the extension. The only thing is whether you get vaccine now, or you wait 3 months and go in for a recheck, but either way, you are still in the extension. At least that's my understanding.
I guess I should clarify, Patrick, I have had two blood draws for the extension study. I flunked the first one, and just had the second one on June 27th. Waiting for the results of that one now!
Posted: Sat Jul 05, 2008 3:31 pm
by patrickm
av8rgirl wrote:
I guess I should clarify, Patrick, I have had two blood draws for the extension study. I flunked the first one, and just had the second one on June 27th. Waiting for the results of that one now!
And what was the result of the first one? Either you've got 'em or you don't and if you don't then they watch you. Unless I completely missed something...
right?
Posted: Sat Jul 05, 2008 5:38 pm
by av8rgirl
patrickm wrote:av8rgirl wrote:
I guess I should clarify, Patrick, I have had two blood draws for the extension study. I flunked the first one, and just had the second one on June 27th. Waiting for the results of that one now!
And what was the result of the first one? Either you've got 'em or you don't and if you don't then they watch you. Unless I completely missed something...
right?
I flunked the first one...didn't have any MRTCs. I was rescheduled for a redraw 90 days later. About 2 weeks after the first draw, I had an exacerbation which was bad enough for 3 days of IVSM. Fortunately, it only delayed the redraw by a couple of days so the 2nd draw was done on June 27th and I am waiting for the results of MRTCs now.