Hi all,
Tues I had what I am guessing to be my 111th infusion. I am now getting infused every 8 weeks, for awhile I was infused every 6 weeks-see why I'm guessing ;)

What I do know is I am starting my 10th year on Tysabri :D

Linda

Hey!
Just stopping by to check in!

Everything's fine here, still infusing every four weeks, no problems, no concerns, still negative for antibodies. I had my infusion Thursday (# 109?) and this is my month for two infusions so I expect that I will have the usual tug of war with the insurance co. since they just don't get that there's 13 infusions a year...:rolleyes:
Life is good!

Forgot to add this!
Did anyone see this report on a possible JCV vaccination?
It's in "Multiple Sclerosis News" dated Sept 25, 2015. Hope it's ok to post the link!

http://multiplesclerosisnewstoday.co...-ms-treatment/

Hi River. Happy you are still doing well.:hug:

hmm, hadn't heard that at all. very interesting!

18th tysabri infusion down (of the 2nd try), i'm doing very well, couldn't be happier! i am having a slight reaction the day after infusion, feels like i'm getting a sinus cold, but it went away by afternoon. hope all of you are well :)

Hi everybody,

I'm just checking in. I have been working a lot. I'm not sure what # infusion I am on now. I've lost track. But I've been on Tysabri for 7 years and 4 months now. :) Instead of every 8 weeks I've been doing it every 7 weeks. Switching helped with the fatigue. I'm still JCV negative (knock on wood). Whoohoo!

I hope everyone is doing well. I haven't forgotten about NT. Just super busy!

N

I just read an article on a study of 2,000 people showing that if you get Tysabri every 8 weeks it has the same or better efficacy rate as every 4 weeks. And it reduces PML risk. This is something worth asking your doctor about.

http://www.medpagetoday.com/MeetingC.../ECTRIMS/53974

Hiya Sal! I'm fine! Hope you are too! :hug:

This is why I came here today, to see if anyone had heard news about this.
I was fast asleep (comatose) after working all night. My infusion center called. We set up a schedule six months at a time and had scheduled the Nov. infusion for the day before TG since I usually do my infusion on Thurs.

The nurse told me that she called my doc just to let him know that my order giving me a little leeway (4 days either way) on the every 28 day schedule was expiring and that I had infusion scheduled a day ahead due to the holiday and that he refused to extend my order. He said that he was concerned even though I am still negative and wanted me to go to the every 8 weeks schedule.

I told her that it was impossible to rearrange my schedule that quick and that I had to talk to him and I would be in on Wed. for my infusion, and I hung up. I thought I dreamed the whole thing but called her back later and confirmed the call...:eek:

The day before the call I had been here reading back looking for something in this thread and found a post from a few years ago about telling my doc that I would let him be the doctor if anything changed.

He's usually very good about calling me if something changes or needs to be discussed, and I never heard a thing from him...and after fuming for a few minutes I realized that it is time to let go, shut up, trust him and just be a normal patient. :eek:
How's that for a holiday insight?

I'm pretty sure that this will be my last infusion on the 28 day schedule and that I will be moving to the 8 week schedule. I'm glad all of you trailbreakers went before me so I have some reassurance that it will all be ok.

I'm still peeved that he didn't call me first. :cool:

Welcome to the every 8 week club RW! :trampoline:

One thing to think about too. I read awhile back that Tysabri may be dose dependent based on weight. Skinnier underweight people were more apt to get PML. I have an appt with the neurologist in 2 weeks. I've been meaning to ask how that factors in.