Does anyone else start feeling awful a week to a few days before their next infusion

[akfamily3]

I have had 3 infusions and I am noticing that about a few days to a week before my next infusion - I start feeling like I am slipping back under the MS cloud - tired, dizzy, off balanced, numbness and such. Is that normal?? I have it in my journal to ask my dr about it on Tuesday but just wondering if this is a common thing. I feel like I shouldn't complain because I feel 300% better than when I was on Rebif.

[ru4cats]

You're experiencing what us "old-timers" call "jonesing". For me, this effect went away after about 6 infusions. It takes that many to build up a maintenance level of Ty in your bloodstream. I've just completed 3 years on Ty, and my life now revolves around my 28-day months. I, quite literally, notice no difference at all day-to-day. I love Ty!

[LL60]

ru4cats is right, I think a lot of us go though that at first. For me, it also was about 6 months. The energy I felt afterwards lasted a few days, then a week, then it got to where it lasted almost the whole 4 weeks. After about 3 years on Tysabri, I found that I only get about 3 "great" weeks from it, I am sort of back to that last week really feeling completely worn out. (I have been on it for 4 years.) But, then I go get my infusion and come home and sleep all afternoon and night and wake up like a new person. For 3 weeks at least.

[regi girl]

I JUST HAD INFUSION #12, I HAVE HAD SOME MONTHS WHERE THE WEEK BEFORE MY INFUSION I FELT REALLY BAD, BUT I'VE HAD FEW MONTHS RECENTLY WHERE I FELT GREAT THE WEEK BEFORE.

BUT THESE TIMES ARE, OH MS MOMENT, I CAN'T PUT THE THOUGHT IN WORDS SO BARE WITH ME. THE GOOD WEEKS BEFORE TY ARE MIXED IN WITH THE BAD WEEKS. GOOD WEEKS HAVE NOT BEEN CONSECUTIVE MONTHLY, THERE, THAT'S THE WORD. DOES THAT MAKE SENSE? THIS MONTH I FELT GREAT WHEN I WENT IN FOR TY BUT LAST MONTH I FELT AWFUL AND THE MONTH BEFORE THAT I FELT PRETTY GOOD.

MOST MONTHS I'M WIPED OUT AFTER INFUSION, I GO HOME AND PASS OUT AND SOMETIMES I'M STILL WIPED OUT THE NEXT DAY. BUT LAST MONTH I CAME HOME TIRED BUT I NEVER NAPPED AND WENT TO WORK THE NEXT DAY. LAST WEEK, I FELT AWFUL WENT HOME AND CRASHED, TRIED TO WORK THE NEXT DAY AND HAD TO GO HOME EARLY.

I GUESS WHAT I'M TRYING TO SAY IS THAT I DON'T SEE A TRUE PATTERN YET.

[tiggy]

i have been on tysabri for just over 2 years and i found this happened to me each month i didnt realise it was normal just thought i was nuts but felt so much better after the infusion i normally feel better for about 3 weeks after the last week is rough

[lindaincolorado]

Hi akfamily3, I was "jonesing" for my drug of choice for maybe almost 2 years. Now for years I just live my normal busy life and stop into the infusion center every 28 days
Take care

[akfamily3]

Thank you for answering. It is nice to know I not crazy or just feeling mad about how I feel effect what I do.

[ms man]

I have had 3 infusions and I am noticing that about a few days to a week before my next infusion - I start feeling like I am slipping back under the MS cloud - tired, dizzy, off balanced, numbness and such. Is that normal?? I have it in my journal to ask my dr about it on Tuesday but just wondering if this is a common thing. I feel like I shouldn't complain because I feel 300% better than when I was on Rebif.

I've been on Ty for about 5 years.I do remember I would have those feelings you're having at first but very mild.Before Ty I would get vertigo but ty as vitually eliminated vertigo.

[moolk]

worn out after infusions

I'm on my 13th infusions. I no loner feel tired before my next infusion but I still am tired and weak for a few days after an infusion. That's ok...Ty makes me feel "normal" (or from what I remember "normal" being) for the majority of the month. My doc now wants me to stretch out my infusions to every 6 weeks. Not sure how I feel about this.