Starting Wash Out for Tecfidera

[REG53]

Hello everyone,

I took my last infusion yesterday to begin a 2 month wash out period before starting Tecfidera. I had blood work and
signed all the paper work to get me started.

This is not an easy decision since ty has been good for me.
My Dr. strongly recommended me to stop ty and get on Tec. and I have been getting more nervous as the months mounted.

I pray Tec. will also be good for me. I have read some people have been having a hard time with side affects at first so I am praying I will do well.

[Windwalker]

How long have you been on Ty?
Is the switch due to an increasing risk of PML?

[REG53]

Windwalker-- I have had 77 infusions and I am JCV+ so that makes my risk of getting pml 1 in 192 so yes that is why I am switching.

[LL60]

REG53

I wish you the very best results with the new med.

[REG53]

LL60 -Thank you.

[REG53]

Today is my last day of 2 mo. wash out from Ty. I have not had any rebound effect. I am having some burning but it started before wash out.

I will start Tecfidera tomorrow and I am nervous.

[Sandy5673]

Good read

It was good to read that you had no rebound effect after 2 months. I too am about to start a washout period and don't know what to expect. Reading your posts gives me hope!!

Thanks and I pray for your continued success!

[REG53]

Sandy- Thank you and I will pray for you also. Let us know how you are doing.

[lindaincolorado]

Hey REG, I cannot believe this is the first time I am seeing this post anyhoo, I am glad you have no issues quitting Ty and so hope Tecfidera will be a great med for you.
You go girl

Sandy, good luck and I hope you do really well !

[REG53]

Linda- Thank you.

[regi girl]

unsure

Hey Reg, thanks for sharing your 2 month washout. I am also on ty and JCV+, I AM SCARED TO DEATH TO STOP. IT GIVES ME HOPE THAT YOU DID NOT EXPERIENCE A REBOUND EFFECT. I HAVE HEARD THAT THE LONGER YOU ARE ON TY THE LESS LIKELY YOU ARE TO SUFFER FROM THE REBOUND AND YOU WERE ON IT FOR QUITE A WHILE. HAS ANYONE ELSE HEARD THIS? IF SO PLEASE SHARE.

I'VE BEEN DOING SO GOOD ON TY, STILL HAVE THOSE BAD DAYS LIKE YESTERDAY. NOT FEELING TOO GOOD TODAY I KNOW I'M GOING TO HAVE TO LEAVE WORK EARLY AND SLEEP.

WHEN I HAVE THESE SICK, LATHARGIC, DIZZY, OFF BALANACE, TREMORS, DOUBLE VISION, SEVERE FATIGUE DAYS WHICH HAVE BEEN LESS SEVERE, VERY SHORT TERM AND NOT VERY FREQUENT, IT REMINDS ME OF WHAT IT WAS LIKE BEFORE I STARTED TY.

I GO BACK AND FORTH ON MY DECISION WITH TY, I STILL HAVE SOME "SAFE" TIME LEFT BEFORE MY ODDS GO TOO HIGH.

PLEASE KEEP US INFORMED ABOUT YOUR EXPERIENCE WITH YOUR NEW MEDS. THANKS!!!

[Torn]

I was told that it wasn't a good idea to do a washout for tysabri to tec. I was told rebound effect was to risky. Interesting.

[REG53]

regi girl- I'm glad you are doing well on ty but sorry you are having some bad sx's yesterday and today. I hope you feel better soon.

Torn- Yes there is a risk of having a rebound effect but I am glad I am doing okay and I hope I continue.

When I first started talking to neuro about tec he said I didn't need a wash out but then he decided on 2 mo's.

[regi girl]

JCV# high

I'm so upset, just got off the phone with my Doctor, my JCV number he considers is high, I don't THINK I should post it, I don't want to influance someone else.

BUT TO ME AND ALSO TO MY DOCTOR IT'S HIGH, FOR SOME STUPID REASON I JUST DIDN'T THINK IT WOULD BE HIGH, I DON'T KNOW WHY. NEVER THOUGHT MINE WOULD BE HIGH, I GUESS POSITIVE THINKING GONE AWRY.

I FINALLY HAVE MY LIFE TO A PLACE WHERE I'M ABLE TO DO SOME OF THE THINGS I LOVED BEFORE WITH SOME LIMITATIONS. I SHOULD LEARN TO KEEP MY MOUTH SHUT, I'VE BEEN TELLING EVERYONE HOW MUCH BETTER I AM AND I'VE BEEN WORKING ON WALKING OVER A MILE EVERYDAY TO SOME DAY MAYBE EVEN BEING ABLE TO RUN AGAIN ONE DAY.

I CAN'T QUIT CRYING, IT JUST SEEMS THAT I'VE BEEN THROUGH SO MUCH, HEALTH WISE AND MARITAL PROBLEMS, IT'S JUST SUCH A BLOW TO ALL THE HOPES I HAD, I THOUGHT MY LIFE MIGHT FINALLY BE LOOKING UP.

I'M SORRY SHOULDN'T POST WHILE I'M UPSET AND CRYING, THANKS FOR LISTENING.

I KNOW SOME PEOPLE WITH HIGH NUMBERS ARE STAYING ON, I JUST DON'T KNOW IF I CAN DO THAT. I RESPECT THEIR DECISIONS AND I MAY DO THE SAME, I JUST DON'T KNOW WHAT I'M GOING TO DO.

GOING TO GO CRY AND PRAY.

[REG53]

regi girl- I am so sorry you got a bad report and please don't be sorry for being upset, we are here for each other.

I never knew my JCV numbers, I just know I am JCV+ and had 77 infusions. I was up and down with my decision it was so hard for me to come off of TY but in the end I listened to my DR.

You've had a hard time and it's understandable you are so upset. I will pray for you also and I truely hope no matter what decision you make you will do well.