Feeling crummy after 3rd Tysabri Infusion - Anyone else had similar expeirience?

[gchunter]

Hi All,

This is my first post.. i am a 55 yo male diagnosed in late 2012. I was on Aubagio for 2+ years but had a flare with new lesions back in April that affected my vision. Neuro wanted me to try a different med. I was on Tecfidera for a couple of months but had GI issues.

I started my 1st Tysabri infusion in July 2016. Felt ok except for a little insomnia the 1st couple of nights. After my second Infusion I felt crummy for about a week.

I had my 3rd Infusion and I have felt crummy, slight headache & run down with no energy ever since. Even missed a couple of days of work last week.

Just would like to know if anyone has experienced something similar or have any other input.
Neuro does not want me to stop because of the rebound effect and because my MS had been active.

Thanks in advance..

Al

[ru4cats]

I haven't experienced anything like you have, and my next infusion will be #82. However, it takes 6 months for Tysabri to reach "saturation" level in your body. If you can tough it out to then, maybe the symptoms will level out. If not, you might be one of the few who can't tolerate the drug. .

[suenan]

I just took my fourth infusion a couple days ago. The first two went great and by the next day I felt like a new person. Loved it! Then the third month I had a little reaction to the infusion just as it was ending. Felt pretty wiped out the rest of the day, then good. So now this one...had a reaction within 7 minutes of starting the infusion. The doctor ordered IV steroids and benedryl, which stopped the reaction and I was able to continue with the infusion. Pretty wiped out for a couple days, but good now. I'm hoping this won't continue because this medicine has helped me feel almost normal again and I don't want to stop getting the infusions!

[ru4cats]

suenan,

I had something similar on my 4th and 5th infusion...I just gutted it out, and it was gone in about 10 minutes. I've had absolutely nothing since. Your 6th infusion will take you to a saturation level, and hopefully you'll stabilize. Some people jonesy for their infusion about 5 days before they are scheduled. For me, even that has gone. I'm getting ready for infusion 82.

[lefty12]

Hi gchunter,
I have taken my 3rd infusion of tysabri approx. a week ago. Like some others, I have experienced headache, tiredness and joint pain. The joint pain was sever for approx. 3 days. My neuro's office said it was normal and the drug had to build up in my body, I guess saturation level. I will take it in stride and hope for the best after the 6th infusion.
Good Luck.

[suenan]

suenan,

I had something similar on my 4th and 5th infusion...I just gutted it out, and it was gone in about 10 minutes. I've had absolutely nothing since. Your 6th infusion will take you to a saturation level, and hopefully you'll stabilize. Some people jonesy for their infusion about 5 days before they are scheduled. For me, even that has gone. I'm getting ready for infusion 82.

Thank you ru4cats for the info. I hope you are right and it'll reach saturation. I am a bit concerned with it being an allergic reaction, but we will see.

[lukeduke]

I have been on Tysabri sine December 2012. I have never had that experience with. The first almost three years I was doing the infusion at a center that was over four hours away. I have actually taken the IV left and drove home. Tysabri has been wonderful to me. When I was diagnosed was before Biogen took it off the market. I was scared of it. I have done so well on it though that as long as I am JC- I am going to continue with it. I actually lost my job earlier this year and was three weeks late getting it did to getting new insurance. Had to wait for the "prior authorization" for it. I finally found a job and do not know how the insurance there is going to work for it. Which my current insurance company advised me not to get on my company's insurance until 2017. I have ready met my out of pocket maximum for the year. I will have to see.

[carriefromMI]

Yes. I only tolerated 2 Tysbri infusions. The headache, fatigue and overall crappy feeling was every day due to the infusion. Once I stopped it went away. Since then I've done daily copaxone, Tecfidera, and 3x week copaxone. It's time for me to change again so I'm reconsidering Tysabri...but...

[lindaincolorado]

I think it was between infusion 4-5 that I started noticing that I was doing better on Ty I have had approx 110 infusions since 10/2006. I have been getting infused every 56 days for maybe 2 years now, did it every 6 weeks for awhile so, difficult to keep track of infusions. I hope Tysabri works to your highest good!

I wish you all well

[suenan]

Me again. Since I posted last, my dr changed the infusion from one-hour drip to two, with an hour observe. She also included pre-meds each time. But they just weren't doing as well for me as they did at first. So she ordered a blood test. I got the results back from those that showed I had developed antibodies to the Tysabri. I'm pretty unhappy about that because this drug was awesome for a few months! Now on to something else. She is suggesting the new medication that came out last month. I have to have my mind made up when I see her tomorrow. Yikes!

[Carolinemf]

Good luck!

[ru4cats]

Ocrevus seems to be getting good results. I posted a webinar from April 12 that was conducted by Dr. Vollmer. It is listed in the Ocrevus forum under medications and would provide you with lots of good information. You might like to have a look before your appointment.

[sunshine008]

Same rough run

Hi I see this is an older post, figured I'd jump in. Just had my first infusion little over two weeks ago. It knocked me off my feet lol. Had pretty much any side effect you can imagine.. from naseous to flushing theist closing, hives, exhaustion. Way I see it, it's a fight to shut the disease down so it's not going to be easy. How are things on your end now? I'm hoping better





QUOTE=gchunter;1496475]Hi All,

This is my first post.. i am a 55 yo male diagnosed in late 2012. I was on Aubagio for 2+ years but had a flare with new lesions back in April that affected my vision. Neuro wanted me to try a different med. I was on Tecfidera for a couple of months but had GI issues.

I started my 1st Tysabri infusion in July 2016. Felt ok except for a little insomnia the 1st couple of nights. After my second Infusion I felt crummy for about a week.

I had my 3rd Infusion and I have felt crummy, slight headache & run down with no energy ever since. Even missed a couple of days of work last week.

Just would like to know if anyone has experienced something similar or have any other input.
Neuro does not want me to stop because of the rebound effect and because my MS had been active.

Thanks in advance..

Al[/QUOTE]