Severe fatique immediately after infusion?

[regi girl]

I'VE ONLY BEEN ON TYSABRI INFUSIONS FOR 10 MONTHS.

THE FIRST 6 MONTHS I DROVE ABOUT AN HOUR AND 20MINUTES (EACH WAY) TO MY NUREO'S OFFICE TO GET MY INFUSIONS. I WOULD BE TOTALLY WIPED OUT WHEN I GOT HOME AND WOULD GO STRAIGHT TO BED AND SLEEP FOR HOURS. WAKE UP AND EAT AND THEN GO BACK TO SLEEP FOR THE REST OF THE NIGHT.

SOMETIMES I WAS UNABLE TO GO TO WORK THE NEXT DAY BECAUSE I JUST NEEDED TO SLEEP.

SO I JUST THOUGHT IT WAS THE LONG DRIVE.

FOR THE LAST 4 INFUSIONS I WENT HERE LOCALLY BUT IT'S STILL THE SAME. I GO HOME AND CRASH, BUT USUALLY GO TO WORK THE NEXT DAY.

INFUSION WAS YESTERDAY, CAME HOME CRASHED FOR 2 HOURS. ATE A BITE, WATCHED A LITTLE TV AND THEN SLEPT LAST NIGHT FOR 14 HOURS.

I FEEL OK TODAY JUST A LITTLE SLUGGISH, OF COURSE I MISSED WORK AGAIN TODAY. TOMORROW I WILL PROBABLY BE FINE, I USUALLY AM THE SECOND DAY.

OTHERWISE I FEEL TY HAS BEEN GREAT FOR ME. I DON'T HAVE THE DIZZINESS AS MUCH ANYMORE WHICH WAS ONE OF MY WORSE SYMPTOMS, FATIGUE IS BETTER, STILL HAVE IT, BUT NOT AS BAD.

I AM NOW JCV+ (THAT'S FOR A DIFFERENT THREAD) BUT I THINK TY IS REALLY HELPING ME, JUST WONDERING IF ANYONE IS WIPED OUT LIKE THIS WHEN THEY GET THEIR INFUSIONS OR AM I JUST WEIRD AS USUAL?

THANKS FOR ANY IMPUT.

[MSW1963]

I had MS fatigue in the worst possible way before I started TY. Like you, first insusions wiped me out immediately after the infusion and sometimes for the first week.

Within the first 4-6 months I experienced recovery of bowel incontenience and 10yrs of insomnia. I'm still doing the happy dance after recovering from insomnia and bowel incontenience.

BTW, neither of those sx's was ever acknowledge as sx's associated with my MS, that is until I had recovery from both.

I'm JCV+, had some doc office 'snaffoos'/?sp regarding my financial assistance for the first several infusions. Because of the financial burden the office errors caused, I tried to stop TY on 2 occassions with horrible results from the "Rebound" effect from discontinuing TY. For full disclosure, just want to give you a heads up about the long term committment TY might be.

If you are one of the lucky ones like me, you may experience 'relief' from the post TY infusion fatigue.

Good luck and keep us informed about your progress/set-backs from your infusions.

[regi girl]

Thanks

Thanks for your reply, the rebound effect you mentioned does scare me, how bad was it?

So that makes me feel better to know that someone else had the same fatigue reaction. It's weird because in the long run, the fatigue has gotten better after the ty. I guess we just get the fatigue out of the way in the first few days so it will go away later. lol

[fishead]

I TOO, would have to go home and sleep for hours when I first started Tysabri. It did lessen, and at the end of my 60 months on Tysabri, I had NO fatigue post infusion. I hope your body gets adjusted to it and your fatigue lessens.

[MSW1963]

Yes, with the exception of the initial post infusion fatigue, I've experienced a mild 'lifting?' of the opressive type fatigue I've had with MS.

The rebound included major cognitive problems . I thought I would have to stop driving. I do remember being in a constant state of being 'startled', not anxiety although that was pretty bad too. But I think the feeling of constantly being startled was the stress knowing that cognatively I wasn't doing very well.

I had a major episode of Gait Apraxia, not able to stand up-right with shuffeling steps. GA was a new sx for me and major progression in terms of my mobility.

It's been approx. 1yr since my last attempt to stop TY. I have not fully recovered, although it is at 'base line', meaning it comes and goes through out the day, and to a milder extent then initially.

[mgoerke]

I just had #20. For the first few months I did have to come home and collapse, but it got better. Now it only happens occasionally and we joke that they were putting poison in the Ty that month :-)

As for sx improvement for me, there has been none. Maybe a slight improvement in pain in soles of my feet, but I also stopped working so I'm not on my feet as much.

Fatigue is one of my primary sx and it had continued to worsen over time. I am also experiencing increased spasticity. My latest MRIs taken this week were again stable.

So on the one hand I have gone 21 months without a flare or new lesion, but I am experiencing continued decline. It is a much slower decline than pre-Ty and that is good enough for me!

Good luck!!!

[nurcindy3]

TRYSABRI

I'VE ONLY BEEN ON TYSABRI INFUSIONS FOR 10 MONTHS.

THE FIRST 6 MONTHS I DROVE ABOUT AN HOUR AND 20MINUTES (EACH WAY) TO MY NUREO'S OFFICE TO GET MY INFUSIONS. I WOULD BE TOTALLY WIPED OUT WHEN I GOT HOME AND WOULD GO STRAIGHT TO BED AND SLEEP FOR HOURS. WAKE UP AND EAT AND THEN GO BACK TO SLEEP FOR THE REST OF THE NIGHT.

SOMETIMES I WAS UNABLE TO GO TO WORK THE NEXT DAY BECAUSE I JUST NEEDED TO SLEEP.



SO I JUST THOUGHT IT WAS THE LONG DRIVE.

FOR THE LAST 4 INFUSIONS I WENT HERE LOCALLY BUT IT'S STILL THE SAME. I GO HOME AND CRASH, BUT USUALLY GO TO WORK THE NEXT DAY.

INFUSION WAS YESTERDAY, CAME HOME CRASHED FOR 2 HOURS. ATE A BITE, WATCHED A LITTLE TV AND THEN SLEPT LAST NIGHT FOR 14 HOURS.

I FEEL OK TODAY JUST A LITTLE SLUGGISH, OF COURSE I MISSED WORK AGAIN TODAY. TOMORROW I WILL PROBABLY BE FINE, I USUALLY AM THE SECOND DAY.

OTHERWISE I FEEL TY HAS BEEN GREAT FOR ME. I DON'T HAVE THE DIZZINESS AS MUCH ANYMORE WHICH WAS ONE OF MY WORSE SYMPTOMS, FATIGUE IS BETTER, STILL HAVE IT, BUT NOT AS BAD.

I AM NOW JCV+ (THAT'S FOR A DIFFERENT THREAD) BUT I THINK TY IS REALLY HELPING ME, JUST WONDERING IF ANYONE IS WIPED OUT LIKE THIS WHEN THEY GET THEIR INFUSIONS OR AM I JUST WEIRD AS USUAL?

THANKS FOR ANY IMPUT.

OMG! JUST THE POST I HAVE BEEN LOOKING FOR. I HAVE BEEN DIZZY FOR 18 YEARS. WAS MY FIRST SMPTOM AND HAS NEVER COMPLETELY GONE AWAY. I HAVE BEEN BATTLING THE DECISION ON IF I SHOULD START TYSABRI OR NOT AND YOUR POST HAS REALLY HELPED WITH MY DECISION. I HAVE NO IDEA ANYMORE WHAT IT IS LIKE TO NOT BE DIZZY.
THANK YOU FOR YOUR POST, AND I DO HOPE THAT THE INFUSIONS CONTINUE TO IMPROVE YOUR LIFE.

[regi girl]

nurcindy3, THANK YOU FOR ANSWERING MY POST AND LETTING ME KNOW THAT IT WAS A HELP TO YOU.

THIS HAS BEEN ONLY MY 2ND POST AND I'M GLAD IT HAS HELPED WITH YOUR DECISION.

I HOPE YOU HAVE THE SAME RESULTS AS I HAVE HAD. I STILL HAVE SOME DIZZINESS BUT IT'S NOWHERE NEAR AS SEVERE AND AS OFTEN AS IT WAS.

GOOD LUCK!

[Stacer]

sleepy

I get very sleepy right after my infusion...not MS fatigue, tired. I have had 51 infusions. It seems like it's not as pronounced now, but in the first 2 years, I always needed a nap afterwards.

[hexed]

I would say that I have fatigue RIGHT after the infusion, but it is a steady decline for the 6 hours post infusion. By the time I get home I can feel a little lethargic, but within the next 3-4 hours as I am at home resting, my muscles become so week that at the 6 hour mark, I feel like I can barely stand up. I tried to pinch myself as hard as I could the first time this happened and it felt like I had ZERO energy in my muscles. It really felt like a baby was trying to pinch me. The best way I can describe it is like I went to the gym and worked out all of my muscle groups to absolute failure. Specifically getting up and sitting down is like I overdid myself in squats at the gym. Muscles aren't "sore" but are completely fatigued.

I have only been through 2 infusions so far but both were the same. I have had no relaxing of symptoms specifically.. but my continuing symptoms are no feeling/tingling in my hands 100% of the time, and only moments of tingling from my waist down. I have not had any trouble walking, and every other problem I experienced outside of my initial attack, has been complications from being on Rebif (I shudder to think about going back to it).

I can say that on the next day (Saturday), I do not feel nearly as week but I am lethargic for the majority of the day. I do however have a good amount of energy after that (Sunday and on) which is a blessing.

...also remember (and I hate to be the Debby Downer here).. but Tysabri is and never has been meant to reverse symptoms. A small percentage report a reversal, but don't expect that. What you SHOULD expect is a decrease in attacks/episodes.

[Tomjadg]

Funny how different it affects us.

I have had 24 infusions, and the next day my legs are more "wobbly". I get no other effects from it.

I continue a steady decline, but so far, my brain has shown no new lesions. I am +, and will continue with Ty.

[LL60]

I always assumed that the wiped out feelings I had on the infusion days were from the Benadryl I was given. 50 mg, which is a pretty big dose. So I have not been taking it and am very surprised I still am wiped out after the infusions. So it wasn't the Benadryl. I go home, go to bed, get up for an hour or so and go back to bed for the night.

Some times I wake up the next day full of energy and have to be careful not to over do it. Sometimes this lasts a few weeks, sometimes only a few days and I just can not pin point what is different that makes it this way. I just try to enjoy the good days and get though the bad ones.

As the years pass it seems like I am just not getting the energy from it that I was the first couple of years. That could just be an age thing too.

I hope those of you who are just starting find this as good as a drug for you as many here have. I really have no side effects and it has been a great drug for me. I was one of the ones who saw reversal in many symptoms. Just can not believe it.
I was on Copaxone for 5 years and it did nothing. This has been wonderful. Good luck to all of you.

[regi girl]

I GUESS I'M MS NORMAL

THANKS EVERYONE FOR YOUR REPLIES. AT LEAST I'M NORAL IN THE RELM OF MS.
SOMETIMES I'M WIPED OUT THE NEXT DAY AFTER TYSABRI AND SOMETIMES I'M OK.

I'M ALSO IN LIMBO ABOUT WEATHER TO STAY ON TY OR GET OFF BECAUSE I'M JVC+, REALLY SCAREY TO ME BUT THE REBOUND EFFECT I THINK IS EVEN MORE SCAREY.

I DON'T KNOW WHAT TO DO. I'M LEANING TOWARD STAYING ON IT. I GO TO NEURO NEXT WEEK HE INTENDS TO TAKE ME OFF AND START ON EB12 BUT THAT'S BEFORE I FOUND OUT ABOUT THE REBOUND EFFECT. MY GP SAYS GET OFF, ITS NOT WORTH THE RISK BUT THAT IS A DECISION HE'S SAYS ONLY I CAN MAKE.

I HAVE SO MANY OTHER CONFLICTS IN MY LIFE THAT I STARTED SEEING A THERAPIST LAST WEEK. I THINK IT'S GOING TO BE A GOOD THING, SHOULD HAVE DONE IT SOONER.

THANKS FOR ALL THE RESPONSES!

[palmtree]

I DO WONDER, WHAT IS THE REBOUND EFFECT? DOES THAT MEAN FAST MS PROGRESSION? A FEW LITTLE SYMPTOMS WOULDN'T BE SO BAD BUT A MAJOR DECLINE VERY SCARY.

I, TOO, FEEL VERY TIRED AFTER THEY INFUSE ME. I GUESS I WAS LUCKY FOR AWHILE. THE HOSPITAL LET ME STAY AND SLEEP AFTER SO I COULD DRIVE HOME SAFELY. NOW THERE IS A NEW HEALTH CARE LAW THAT EMPHASIZES GETTING RID OF PATIENTS. NOW, RIGHT AFTER THE INFUSION THEY SAY "TIME TO GO HOME." SO I DRAG MYSELF OUT INTO THE HOT SUN. AFTER I DRIVE HOME IT TAKES 3 DAYS TO RECOVER.

I won't go into politics here but the changes mean less care for sick people and more surgeries.

IF YOU SEE MY POST ON BIOGEN I MAY BE STOPPING TY SO ILL FIND OUT WHAT THE REBOUND EFFECT IS LIKE.