Has anyone NOT liked Tysabri?

[Ikaika]

I have only had two infusions of Tysabri so far. So I KNOW it's early...but any input would be appreciated:

The infusions themselves are in eventful with no side effects...until the next day. Enter in hibernation fatigue for at least three days then a slew of new symptoms. NOT liking this med at all .

I have only met and heard from people that absolutely love Tysabri.

Since this is only the second month, I am willing to try a third to see if it's gets better. However, I am so uncomfortable and nothing seems to help the side effects....

I was on Copaxone for six years with excellent tolerance, and very few new lesions over the years. I did sadly have a significant decline in symptoms and frequent flare ups. The obvious question is, then why would I switch?

I met with a neurologist that specializes in MS, and she was very adamant that I try this med and try to get some QOL improved. This was only one appt , lengthy appt tho, I had with her and she did review all of MRIs, etc.

I've had a neuro that I've been happy with for about 5 years now. No one is perfect but I definitely trust him. He concurred I would be a good candidate for Tysabri.

I am JCV positive but only a smidgen above the level for what defines laboratory positive- doctor isn't concerned with regular testing etc. neither am I.

Last, although I was happy with Copaxone, I switched to this med as a hope that my symptoms would get better and I can get some activity back. But I feel worse now, in a different way so I suppose its a trade off. I am grateful for the options and feel guilty that I am so uncomfortable with how sick I feel.

Kinda like, why add more fuel to a fire that is already burning? Is Ty that good that's it's worth trudging through these side effects in a hope they'll go away and I can see improvement from the original symptoms...?

Sorry for long post....bottom line is:

Am I the only one who wants to crawl out of their skin with this med?
Has anyone tried Ty and went back to their previous med?
Has anyone had bad symptoms at forts but then they improved?

Yes, I know it is very early on. I am only posting because I'm uncomfortable enough that I can't find any relief despite efforts to do so. So when all else fails, go to the boards
And PRAY!

Thanks for reading this long, winding post.
Blessings to all of you!

[Ikaika]

Any feedback?
Wish my body and Tysabri had a better love connection but not happening at the moment.

[LL60]

Ikaika,

Sorry, but I love Tysarbi.
So sorry you are having such side effects and feel lousy.

I had headaches in the first 6 months, don't even have those now. I feel so tired the day of and sometimes the day after. That's about it.

It has been a great drug for me. I have JCV+ with high titter numbers. I just don't want to give it up.

I think most people who have the bad side effects go off of it pretty quickly, so they don't usually post here. You can go up in the top right corner and put in "bad side effects to Tysabri" and maybe something will come up.

I felt like it took about 6 months for me to have the full effects (which were good), so maybe it takes that long for bad side effects to go away.

[Kalliope]

I did not like it at all and it didn't like me.

I was told when I started it that they wanted me to stay on it for three months to get past some of the side effects that I may have. In those short three months I had horrible, nauseating headaches, a sinus infection, urinary tract infections, my pain was worse and so was my fatigue. It seemed I was always fighting off one infection after another. I felt awful and pretty much lived curled up on the couch for those months. I'm glad that Tysarbi has helped so many people and that they can take it without problems, but like all medicine, what's good for some aren't always good for others. I am so happy to be off of it. I went from Rebif (wasn't getting the results I needed anymore) then changed to Tysarbi, and then to what I'm on now-Copaxone.

[Ikaika]

LL60,
Thank you- you just answered my prayers. I was sitting here not having the energy to cry but needing to, and praying for someone out there to understand.

I do have a lot of support, but I just feel so lousy I'm starting to feel that ugly misery feeling. And I am a THANKFUL BLESSED person, I just haven't felt as bad as I have this past month since I don't know when.

Thank you for the hope that it may just take a while for the side effects to go away. I'm happy to hear you made it though the six months and are truly reaping the rewards of this great medicine. Yay! We can't give up five minutes before the miracle. For the first time since my dx 6.5 years ago, I'm actually a little frightened. And I know I must have faith.

The doc has me going for a thoracic and cervical MRI this week because some of the side effects are in my extremities. I had a brain MRI the day before my first infusion 11 weeks ago so dr doesn't want to send me again for brain yet. But I actually feel like something is wrong in my brain- haha I just heard it but my eye strain and pressure on my eyes and head are like when I'm on solu medrol for days, but with that miracle drug, at least the effects go away quickly!

Wow I must be a whiner. I apologize. Thank you for being on the boards and sharing your hope.

Hope comes through hardship. Hardship brings hope. Glory is given to God through affliction. When that affliction isn't removed, glory is brought to God through enduring the affliction.

Aloha and Ola Kino (love and good health) to you

[Ikaika]

Ps great idea for a search for "bad effects of Tysabri" I'm going to do that now. Thank you again!

[hunterd]

I know you have not gotten a lot of replies, so I am replying just to bump this up.

I liked my infusions, well may be how I felt after words. I am sorry that you are so miserable, I truly hope it gets better for you soon. Take care

[regi girl]

I'M SORRY IT'S NOT GOING WELL FOR YOU. I WAS WONDERING WHAT KIND OF SIDE EFFECTS YOU ARE HAVING?

I JUST HAD MY 17TH INFUSION AND FOR THE FIRST 6-8 MONTHS I WOULD COME HOME AND COLAPSE IN BED AND SLEEP FOR HOURS AND THEN SLEEP ALL NIGHT. SOMETIMES I WAS TOO FATIGUED TO GO TO WORK THE NEXT DAY AND WOULD SLEEP ALL DAY.

THEN IT WENT TO JUST GOING HOME AND TAKING A NAP FOR AN HOUR OR TWO.

THEN IT WENT TO JUST GOING HOME AND LAYING DOWN BUT NOT GOING TO SLEEP.

I GET MY INFUSIONS IN THE AFTERNOON NOW SO I STILL GO HOME AND JUST REST AFTERWARDS.

BUT AFTER THAT DAY OF THE INFUSION AND THE NEXT DAY, I HAD MORE ENERGY AND IT REALLY HELPED MY FATIGUE. I HAVE NEVER HAD ANY SIDE EFFECTS THAT I AM AWARE OF EXCEPT THE NEED TO SLEEP IMMEDIATELY AFTER INFUSION. I DO HAVE HEADACHES BUT I HAD THOSE BEFORE BECAUSE THE MS REALLY AFFECTS MY EYES. BUT I HAVE NOTICED THAT I HAVE HEADACHES MORE FREQUENTLY, I DON'T KNOW IF IT'S TY OR JUST PROGRESSIVE SYMPTOMS.

I AM JCV+ WITH HIGH TITRE NUMBERS, I'M VERY SAD ABOUT THAT. I WANT TO STAY ON THIS DRUG. BUT WE ARE ALL DIFFERENT. I COULDN'T TOLERATE BETASERON WHEN I GOT OFF I WAS INSTANTLY BETTER SO THIS DRUG MAY NOT BE FOR YOU.

I THINK IF YOU LISTEN TO YOUR BODY YOU'LL KNOW WHAT IS RIGHT FOR YOU, GOOD LUCK AND BEST WISHES!

[pballer76]

Tysabri the best

I was on Ty for 73 infusions. I wish I could go back. I had 73 months with only 1 flare. The 1 flare was my fault, I got in a hot bathtub for too long. I have been on Avonex, Rebif, Tecfidera, and Copaxone. I will hopefully be starting Gilenya soon.

I wish there was a way to get rid of the JC virus. If there was I would be on Tysabri immediately after the blood test results.

[LL60]

pballer,

There is a drug that will take the JC virus out of your system. It is in trials right now with animals, so does have a long way to go. It would be 2015 before they would even start with people. So far, it seems to work about 50% of the time. That's pretty high. I'd take it.

Did you go off of Tysabri only because you were JC+? Did you have high titers?

I am trying to keep an eye on this drug. I will sign right up to try it if they will let me. My doctor called and talked to them about it. I read something where it seemed like it was already in trials with patients. But it isn't yet.

I go to a dinner Biogen is having this month where I live. I will certainly ask about this.

[Ikaika]

THANK YOU ALL for your replies!!

I'm on day 20 of the second infusion and starting to get a smidgen of relief. I really think this medicine is too strong for me. Bizarre as that sounds given I have had the works like many, paralysis, blindness, fatigue, the whole nine...but less is more for me and the Copaxone was well tolerated from day one. Hmph.

The doctor let me know today that she doesn't think these symptoms are from the Ty but cancelled my infusion for next week and wants me to wait until the end of the month (which would put me at 6 weeks since last infusion) to see if I get relief from the medicine getting out of my system.

She also prescribed neurotin at a low dose to help with the nerve pain. I don't want to keep taking meds to cover for side effects for other meds, etc...she said use as needed.

Your feedback has really helped me, thank you! I am very body conscious and you are right, my body will let me know. It always does, and it's saying loudly, this is not the time for this med.

I also thank my body, out loud, every day- I try to emit thank you cells, and no joke it helps!!!! Try it

The fact side effects have subsided for some, gives me hope and I'm so grateful that this med has worked wonderfully for so many people!!!

I am not definitive yet on which therapy I'll continue with but at this point, all I want is to go back to my beloved Copaxone it's a trade off on symptoms for sure, but each day my body cries to get this Ty out of my system. It feels so heavy if that describes it, without boring you with the long list of side effects- which you already know

I have done nothing different in terms of medicine, supplements, lifestyle, etc., the only variable was starting the Tysabri and with the 2nd infusion cycle it got worse. I know it's a cumaltive drug too so maybe that's why my body is speaking louder this month.

Another long, winding post- THANK YOU SO VERY MUCH for your feedback!! I'll stay posted. Tomorrow. I have CBC bloodwork and C and T MRI's so will get some answers hopefully. You have made good points that are helping me out of what feels like a maze of quicksand with low ceilings. There IS treatment and hope!a nd you are right again! we just need to find the one that works for us. Getting there is "fun".

Thank you again and blessings to each of you!!!

[Ikaika]

I believe mefloquine is the drug that is currently under trial for JCV. This link is on how it combats malaria|

http://www.drugs.com/pro/mefloquine.html

[Ikaika]

Oops, this is the link:

http://www.webmd.com/a-to-z-guides/m...ne-for-malaria

[pballer76]

LL60,
I quit taking tysabri for two reasons:
Tecfidera was just approved
Jcv and over 72 infusions
My titer is .46
My neuro and the ms specialist both think it's to much of a risk for me to go back on tysabri.

[pballer76]

I have been following this for jcv:
http://www.inhibikase.com/news-events/