Mandatory Rest Period

I really don't want to post anything negative about Tysabri, I have high hopes for it... and this is info based on a small sample of 21 people. But still... It's a bit unnerving to hear that if you stop taking Tysabri after 2 infusions there is an influx in lesions. Ouch. "MRI scans of patients taken before natalizumab therapy and again more than a year after the last infusion showed a mean three-fold increase in the number of lesions compared with baseline, reported Machteld Vellinga, M.D., of VU University Medical Center here, and colleagues. The rebound effect was most pronounced among patients who had received only two monthly natalizumab infusions. They had a five-fold increase in lesion counts post-therapy, the investigators reported online in Neurology, in a study scheduled for the Dec. 11 print version. "It is intriguing that our observation is mainly driven by the patients who had only been exposed to a small number of natalizumab infusions," the investigators wrote. "Although we have no clear explanation for this, the finding of partial immunosuppression giving rise to extra disease activity was previously observed in rats with experimental allergic encephalomyelitis being treated with low-dose cyclosporine A." "It is intriguing that our observation is mainly driven by the patients who had only been exposed to a small number of natalizumab infusions," the investigators wrote. "Although we have no clear explanation for this, the finding of partial immunosuppression giving rise to extra disease activity was previously observed in rats with experimental allergic encephalomyelitis being treated with low-dose cyclosporine A."

- posted by Anonymous @ 10:32 PM - Link @ 10:32 PM - Link to this post - Comments (0)

Tuesday, September 18, 2007
I think I'm figuring it out

I think I'm figuring it out

My injection on the weekend went really well. Until I pulled out the needle that is! I relaxed my thigh muscle well, didn't feel the poke, went in nice and smooth and not too slow, no blood when I pulled back while in the muscle but then I decided to pull out fast and maybe thats where I blew it? I bled like crazy! I see now that I hit a very surface level vein as it's all nicely blue and standing out. I recall my nurse who taught me injections pointing out the "good spots" and I thought I had picked a good-no-vein-in-the-way spot. Clearly I didn't! The good thing is that my turn around time for doing the whole injection is now between 4 to 5 minutes. That includes filling out all my clinical trial log and writing on the box for the trial too. I'm pretty happy about that. I don't "hover" over my leg any more and thats a nice change. Perhaps I should hover a little more on picking a better spot! Oh, and this week, I think I'm on the oral med because I can't even see where the injection hole is now a day later and I had a bit of a headache before dong the injection. So, yup, thats this weeks logic on being on Fingolimod instead of Avonex ;) Man, am I going to love finding out what I'm really on in 8 and a half months! Ohhh that means only 34 more injections to go! Woohooo!

- posted by Anonymous @ 10:31 PM - Link @ 10:31 PM - Link to this post - Comments (0)

			Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos. Subscribe (RSS) My bloglines Archives Current November 2004 December 2004 January 2005 February 2005 March 2005 April 2005 May 2005 June 2005 July 2005 August 2005 September 2005 October 2005 November 2005 December 2005 January 2006 February 2006 March 2006 April 2006 May 2006 June 2006 July 2006 August 2006 September 2006 October 2006 November 2006 December 2006 January 2007 February 2007 March 2007 April 2007 May 2007 June 2007 July 2007 August 2007 September 2007 October 2007 November 2007 December 2007 January 2008 February 2008 March 2008 April 2008 May 2008 June 2008 July 2008 August 2008 September 2008 October 2008 November 2008 December 2008 January 2009 February 2009 March 2009 April 2009 May 2009 June 2009 July 2009 August 2009 September 2009 October 2009 November 2009 December 2009 January 2010 February 2010 March 2010 May 2010 June 2010 July 2010 September 2010 November 2011

	Thursday, September 20, 2007 *Now, what's this about Tysabri* I really don't want to post anything negative about Tysabri, I have high hopes for it... and this is info based on a small sample of 21 people. But still... It's a bit unnerving to hear that if you stop taking Tysabri after 2 infusions there is an influx in lesions. Ouch. "MRI scans of patients taken before natalizumab therapy and again more than a year after the last infusion showed a mean three-fold increase in the number of lesions compared with baseline, reported Machteld Vellinga, M.D., of VU University Medical Center here, and colleagues. The rebound effect was most pronounced among patients who had received only two monthly natalizumab infusions. They had a five-fold increase in lesion counts post-therapy, the investigators reported online in Neurology, in a study scheduled for the Dec. 11 print version. "It is intriguing that our observation is mainly driven by the patients who had only been exposed to a small number of natalizumab infusions," the investigators wrote. "Although we have no clear explanation for this, the finding of partial immunosuppression giving rise to extra disease activity was previously observed in rats with experimental allergic encephalomyelitis being treated with low-dose cyclosporine A." "It is intriguing that our observation is mainly driven by the patients who had only been exposed to a small number of natalizumab infusions," the investigators wrote. "Although we have no clear explanation for this, the finding of partial immunosuppression giving rise to extra disease activity was previously observed in rats with experimental allergic encephalomyelitis being treated with low-dose cyclosporine A." - posted by Anonymous @ 10:32 PM - Link @ 10:32 PM - Link to this post - Comments (0) Tuesday, September 18, 2007 *I think I'm figuring it out* I think I'm figuring it out My injection on the weekend went really well. Until I pulled out the needle that is! I relaxed my thigh muscle well, didn't feel the poke, went in nice and smooth and not too slow, no blood when I pulled back while in the muscle but then I decided to pull out fast and maybe thats where I blew it? I bled like crazy! I see now that I hit a very surface level vein as it's all nicely blue and standing out. I recall my nurse who taught me injections pointing out the "good spots" and I thought I had picked a good-no-vein-in-the-way spot. Clearly I didn't! The good thing is that my turn around time for doing the whole injection is now between 4 to 5 minutes. That includes filling out all my clinical trial log and writing on the box for the trial too. I'm pretty happy about that. I don't "hover" over my leg any more and thats a nice change. Perhaps I should hover a little more on picking a better spot! Oh, and this week, I think I'm on the oral med because I can't even see where the injection hole is now a day later and I had a bit of a headache before dong the injection. So, yup, thats this weeks logic on being on Fingolimod instead of Avonex ;) Man, am I going to love finding out what I'm really on in 8 and a half months! Ohhh that means only 34 more injections to go! Woohooo! - posted by Anonymous @ 10:31 PM - Link @ 10:31 PM - Link to this post - Comments (0)