3/17/09

Hi again, I guess I must be feeling better, as I'm not hanging around on the 'Net, blogging as much as I used to. Even tho I'm housebound much of the time, I find so much to do and I'm extra-slow at it, because I have this handicap called MS. Just went for my 35th Tysabri treatment last week. I got nervous about staying on it for so long, so I went for a consult with a doctor who I consider to be a "Tysabri expert" (Dr. G. in the Phoenix area). He is on some Tysabri committee that meets regularly (drug-maker Biogen). He assured me that I don't have to worry about getting the fatal condition PML, as I have 1 in 6,000 chances of getting it. There is a risk of getting something deadly from Novantrone use (1 in 500), so he has taking ALL of his MS patient off of it. There are roughly 18,000 MS-ers who've been on Tysabri for 2 years, he has 42 MS patients on Tysabri right now. The average time for getting PML is when you've been on Tysabri for 11 - 17 months. So I feel better now about staying on Tysabri. I've tried all the other "popular" MS drugs except Copaxone. I even had 2 treatments of Novantrone in 2005. My heart's "MUGA" was not good after those 2 treatments, so that was enough for me. I've got a scooter to zip around the house in (yes, it's that big). I was feeling lots better in Feb. and "scooted" around too fast. This caused me to catch door frames with my back tires, jam to a halt, and fall over on the floor, still in the sitting position. This is a funny mental image, but I did this not once, but 3 times before I got the hint to "cool my jets". The falls caused no bruises, no broken bones, no blood clots. But a month later, I'm getting a "zinging" like lightning up and down the outside of my left leg (the first fall) whenever I put weight on that leg. My neurologist said yesterday that it sounds like a nerve problem, so in I go for an MRI. I've had many MRI's and I'm curious as to what it will show and what the treatment will be. The ER tried a splint on my leg, but I couldn't stand it for more than 12 hours and took it off. I'm trying the R(Rest) I(Ice) C(Compression) and E(Elevation) treatment, except not the C(Compression). It's helped. Bye for now.

3 comments:

Lauren said...

Hiya Deej...,

I hear you with zipping around too fast in your scooter because I used to zip around too fast also in my powerchair (the fastest speed was set on 4) and after putting a few dents in my doorways & walls, I finally had turn it down to 3 - LOL.

You said "I went for a consult with a doctor who I consider to be a "Tysabri expert" (Dr. G. in the Phoenix area). He is on some Tysabri committee that meets regularly (drug-maker Biogen). He assured me that I don't have to worry about getting the fatal condition PML, as I have 1 in 6,000 chances of getting it. There is a risk of getting something deadly from Novantrone use (1 in 500), so he has taking ALL of his MS patient off of it. There are roughly 18,000 MS-ers who've been on Tysabri for 2 years, he has 42 MS patients on Tysabri right now. The average time for getting PML is when you've been on Tysabri for 11 - 17 months."

Dr. G. is 100% correct..., I never worry about developing PML..., you & your readers might want to take a look at this Tysabri/PML chart that a friend of mine & I have been working on, and you will note that all of the patients that developed PML were previously severely immune compromised due to various medications they had been on (note that those medications have bolded text for easier reading:

http://pietynorwit.com/Tytable.htm

Unbelievable!Congratulations on your 35th Tysabri infusion... I just finished my 32nd infusion yesterday, woo hoo!

I'm glad that you did not physically hurt yourself with your falls, but be careful!

Have a great weekend, Lauren :)

Ted said...

Glad to see you back on the blog.

Ted

www.pafundi.com
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John said...

Hi Deej,

I'm glad that Tysabri has worked for you and sorry to hear about your accident. The risks of contacting PML are minimal, but they are still there. The choice of taking the drug is a personal choice at the end of the day, but what is important that correct data needs to be provided to make the decision correctly. I'm sure that many people would rather read more about PML risk factors and complication rates, rather then searching for treatments for progressive multifocal leukoencephalopathy.
There is a certain category of patients for who has a higher risk for developing PML, like those who are on the drug for over 24 month or previously had any IS treatment.
I read lots of your posts about your "journey" with getting your veins unblocked. I truly hope that you'll find the help you need and get better.