Howdyyy!
I haven't been here for most of the summer because I was having too much fun. It's still warm here, 70s this week so I have to suck up the heat before it gets cold and dark and I have to hibernate!

Good to see everyone's doing well! I had infusion # whatever in Sept, and have two in October, I'm moving backwards! Everything's going well, no problems or concerns as usual.

Natalie, thanks for the PML article you posted. Very interesting to see that they are finally examining the dosage and body size in reference to PML. I always said it mattered and it's nice to have some evidence based study to back it up!
"Different weight based doses were tested in the Natalizumab Phase 2 trials and it was decided that the effect of patient weight on clearance was within typical inter-patient range and so wasn't clinically relevant..." http://www.ncbi.nlm.nih.gov/pmc/arti...MC1936307/#b39 but that was before PML reared it's ugly head. The difference in two people IS clinically relevant ( like when you and I stand side by side eh? ) when it comes to how long it takes to clear any drug and how high the concentration of any drug is in our bodies.
Good site too, I got lost reading there! I liked this study too! http://www.clinicalneurologynews.com...012b44d00.html

Hey Sal? No rafting lately but I was out in my canoe today, checking out the bottom of the lake. The water is being lowered so the dam at the end of the lake can be worked on (some drunk crashed and dislodged the dam) and I was out on glass smooth water searching for treasure!

Courage and Lynn have you had a JCV test lately????? It is now possible to determine how great a risk PML is by the index # on those who test positive. Ask your neuro about it!!!!!!!!

I never had my infusion last week. The nurse not only didn't show up for the infusion she forget to order the Ty I finally had it a few days ago. I can tell when I haven;t had my "Ty fix" on time and not only do I have more balance problems when the infusion is delayed but, it takes longer for me to recover from an infusion.

Has anyone heard of drawing out the infusion for more than an hour?????? I read about it somewhere...and if my brain was working right now I might remember where and why it was done. I'll ask my neuro when I see her in 2 weeks but, I wish I could tell her why I want to take 2 hours instead of 1 hour for the infusion. Perhaps it will help lessen the side effects. I know the new infusion nurse will not be happy.

Now that she is able to start my infusion using a pediatric needle she has me sign the form, begins my infusion, sets the timer and as soon as it goes off she takes out the needle and gets me out of the room as soon as possible. I need to talk to my neuro about that also because I need a bit of time to recover before I can stand up and walk. This new infusion nurse means well but, she seems to be overwhelmed by everything that has to be done Most of the time she forgets to ask questions or take vital signs. It's a good thing I've been on Ty for so long.

I wish I had more info on how much Ty I should be taking. I'm petite...that's an understatement. When I was teaching most of my students were much taller than I....LOL At 4' 10" I'm not sure that I should be receiving as much Ty as someone who is 6' tall. But, at the same time I know I don't feel well if my infusion is delayed so perhaps I do need all of the Ty I'm getting.

Grammy, may I ask what vitamins you take????? I take a multi-vitamin as well as Calcium supplements. If there is something else I can take to stop these darn infections I'll gladly take another pill daily

I hope that everyone is having a good week.

River, It's wonderful that you enjoyed your summer and had less time for the computer!!!!!!!!!!!!!!!!!!!!!!!

hugs to all,
Shayna

Hey RW, glad you are having sooo much fun and that you are doing so well that you can be having sooo much fun l

Hi there Shayna,
I no longer take a multi. I take a 500 C, 400 E, B-100 and 4,000 D (only been taking this one for 2 yrs) the others I have been taking for many, many years. I, also, take magnesium and lecithin but, they are not to keep up my immune system. When my biochemist son told me to keep my immune system strong I said but, I have an autoimmune disease. He said different components to the immune system and you don't want to let yourself open to infections etc. I listened-I rarely get a cold let alone a UTI-which thank G-d I've never had. When I have started to feel like a cold was coming I up my vit C to maybe 2,000 mg a day for 3 days and don't get the cold or if I did, it didn't last long !

This is my story and I'm sticking to it

All take care and be well
Linda

Whoops, in Sept I said I had #84-should've been 85
Last Tues I had #86 I am SO Thankful to Tysabri !!!!
Life is good
Linda

ok so i'm going back on tysabri but dr says i cant have steroids within 30 days, is that well known?

Hi Clark!
The no steroid treatment prior to starting Tysabri is common among neurologists since Tysabri was returned to market in 2006.

The monitoring program advises that you shouldn't have pulse steroids (as in a dose every month) but you CAN have a course of steroids to treat a relapse, but a lot of neuros get nervous about it.

So far there's no news or rumors of a study on this subject now that they have the JCV antibody test.

Hope the restart goes smoothly for you.

thanks riverwild!
i'm back in the hospital for iv steroids,
now my tysabri is delayed, but i'm looking forward to it. my avonex trial seemed like a failure, not to mention it was tearing up my legs, and i decided against copaxone after reading the side effects like injection site reactions etc

I had #43 last Friday. I discovered that there are many patients on the 8 week schedule like me, although for many it's because they more at risk since they are JCV +. When I meet with my doctor next month I plan to ask him if he has switched light weight people to smaller doses.

87th 10/29
It seems jcv negative is considered .20 or less and .40 is considered positive. I am .24 I tried to understand all that was written on the report To me I am negative ?? I hope to "them" I am negative
Hope all are doing well
Linda

1st dose of 2nd run down, dec 4. feeling a little off today but ok overall. except for my legs which has nothing to do with tysabri