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Old 08-03-2013, 02:07 AM #1
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Default Thinner lightweight people have more risk of PML on Tysabri

This article is fascinating and only confirms my long held suspicion that weight often matters when it comes to drug dosing. Smaller, thinner folk just build up a higher saturation of Tysabri and then are likely more immunosuppressed.

http://www.clinicalneurologynews.com...duced-pml.html

What they are suggesting is that people who are JCV + who are 70 kg. or less move to 5-6 week dosing schedules to lower PML risk instead of every 4 weeks.
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Old 08-03-2013, 04:28 AM #2
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Hi Natalie

Do you fit this criteria? I do, so it will be interesting to see if my Neuro suggests a change in my dosage schedule.
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Old 08-03-2013, 08:48 AM #3
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So those less than 155 lbs are more susceptible? I'm glad I stopped it when I did, I was about 120 lbs when I was taking the infusions and for about three years.
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Old 08-03-2013, 09:43 AM #4
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Well, that's good news for me should I ever decide to give TY a try. Finally something positive about not being a stick figure!
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Old 08-03-2013, 01:46 PM #5
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Quote:
Originally Posted by Lynn View Post
Hi Natalie

Do you fit this criteria? I do, so it will be interesting to see if my Neuro suggests a change in my dosage schedule.
Hi Lynn,

Yes I fit this criteria (I'm very thin) but I'm JCV negative (knock on wood!). However I get the drug every 8 weeks now because when I did it every 4 weeks in the beginning I started getting really bad UTI's. But now that makes sense because maybe I was more immunosuppressed because I'm light weight and therefore more prone to bacteria and viruses.

What I find amazing is that it took them this long to figure this out, and only because one doctor thought to investigate!

Yes, I would definitely bring this up with your doctor. I'll be interested to see what your neuro says.
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Old 08-03-2013, 07:40 PM #6
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Nat, big pharma doesn't care, because the more you use, the
more they make. A few peeps dieing in the meantime, is
just "acceptable risk"..$$$$$$
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Old 08-04-2013, 09:56 AM #7
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Huh...my guess is that docs don't take weight into account for any prescribing they do.
It would behoove the pharma that produces Ty to go back and check to see if this theory applies to all deaths from PML...that would help docs alter doses...
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Old 08-04-2013, 10:17 AM #8
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I'm just amazed that something so logical.....and obvious.....wasn't questioned by the doctors prescribing this drug. I mean really, someone who weighs 120 pounds does not need the dosage that someone weighing 250 pounds needs. It's just common sense. It doesn't surprise me that Big Pharma would elect to ignore it but not the doctors! What on earth are we paying these guys for???
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Old 08-04-2013, 10:44 AM #9
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I have a friend w MS who actually asked the weight/dose question after she saw a very large man in her Dr.'s waiting room. It was a question about the original DMD's then but applies to most drugs, wouldn't you think?

Why does a big man take the same dose as my 5'2" female friend? Why doesn't it go my meter squared like in chemo?
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Old 08-04-2013, 10:58 AM #10
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There'll have to be multiple studies.......analyzing the "data".....blah, blah, blah. All the while folks will be contracting PML and the doctors will be scratching their heads wondering what in the world happened. How many folks have to die before common sense kicks in? I simply do not trust the pharmaceutical companies to ever give us the correct story and my trust in doctors is becoming seriously compromised. What are sick folks supposed to do? You know, I get consistently better information from these type of forums than I do from any medical website, magazine or even from my Neurologist.
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