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Old 02-01-2008, 09:50 PM #10
mbsews mbsews is offline
Junior Member
 
Join Date: May 2007
Posts: 21
15 yr Member
mbsews mbsews is offline
Junior Member
 
Join Date: May 2007
Posts: 21
15 yr Member
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I go for #15 on Wednesday the 6th. I have nothing but good things to say.

I was scrupulously, even obsessively compliant with Avonex for 16 months after my diagnosis and although my MRI was stable my symptoms were not and life had become an endless cycle of exhaustion and pain with 5 rounds of IVSM in 13 months. And although I never complained about side effects and truly did not mind the shots, in retrospect I think Avonex contributed significantly to my fatigue and depression.

I have no side effects on Tysabri. It takes 3 hours every 28 days in a very pleasant, relaxing environment with nurses who are extremely competent, kind and patient despite my lousy veins. Thanks to a them, a very competent, organized neuros office, good insurance and some luck I have had no procedural SNAFUs like some people have had.

I saw significant improvement after the first infusion. But I think that is unusual and mostly because when I started Tysabri, I was still in a lingering miserable flare that had not responded to IVSM. My MRI is unchanged since diagnosis. Fatigue is still my rate limiting symptom and has forced me to "retire" from a profession I love though I still hope to work again after some re-training. But overall my fatigue is much better and easier to manage than before Tysabri. Most days I have only minimal amounts of pain on much less medication.

It's not a cure. I still have symptoms every day and believe that I am still seeing steady albeit very slow progression. But my symptoms are much better my overall quality of life is vastly improved. Although Tysabri is only supposed to decrease relapses and slow progression and MRI changes I completely agree with Karen that by quieting disease activity Tysabri gives your body time to heal itself. which it can do if there is not too much damage already accumulated.

I'm not at all worried about PML though I don't discount the very small risk.
I would recommend Tysabri to anybody who had any problems at all with any other disease modifying med.

That's my long story.
mbsews is offline  
"Thanks for this!" says:
barb02 (02-02-2008), ewizabeth (02-02-2008), Jodylee (02-02-2008), KarenR* (02-03-2008), Riverwild (02-02-2008), SurvivingMSwithHOPE (02-02-2008), Swampdoctor (02-07-2008), Victor H (02-02-2008)
 


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