Last January I found myself in the same situation in which you now find yourself. After being on Avonex since 1996, my MS was starting to flare with increased frequency. My Neuro suggested Tysabri. Of course the whole PML issue was a lot to swallow, but the infusions have certainly arrested my exacerbations. I too felt that the infusions caused some minor fatigue, but generally the side effects have bee tolerable. I also don't miss the Avonex side effects. I never was fully over the flu-like symptoms. I don't miss waking up feeling ill each Saturday morning.

Best of luck with your decision.

Thank you for sharing Ranner1!!! Flu like symptoms... mixed with awful sadness... OH....;0/ I have my injections on Mondays (it's already the worst day of the week so might as well....;)

Alex! Thank you so much for your response! I will take it as a sign (please don't laugh;). I did think about Rebif for a minute. Side effects kind of put me of it straight away (girly kind of thing...;) But you are right I should try it first. What do I have to loose...;0)

I'm on my 8th infusion with Tysabri, and I love it.

I started on Copaxone but was allergic to it. Then I moved to Avonex and hated it. I took my shot Friday night, and wouldn't come out of bed until Sunday. My weekends were shot! I was sick the whole weekend, then time for work on Monday i was ready, but I hated life not having any weekends. Last Easter I postponed my shot for the weekend so I could enjoy the time with my family. That was the worst thing i could have done, because i realized just how much I hated the side affects from Avonex that I had. My whole life was passing me by because i was in bed dealing with flu like symptoms. That is when I went to my neuro for help. I had to get off Avonex. I medically was doing fine with Avonex (no more lesions), but I couldn't stand the quality of life that I was leading. So, he suggested Tysabri. We talked about it for months before I actually decided to do it, and I'm glad I did.

The first few infusions found me tired. I would sleep 36 hours straight after my infusion, and I would get nausaus during the infusion. I started taking Claritin (1 tablet) and 2 Tylenols before infusion. Now, my infusion nurse adds Zantac to the mix (for the stomach) since I still get nausaus the whole time I'm getting the infusion.

This last infusion was a real eye opener for me. I was really tired, down in the dumps, and wouldn't even change out of my nightie all day long. I was like this for days before my scheduled infusion. My tysabri was postponed because I had developed bhronchitis and had to do steroids. I was postponed about 2 weeks on my infusion. I could hardly make it to my infusion appointment I felt so bad. As soon as I left the infusion, I felt wonderful. Since yesterday, when I had my latest infusion, I have felt wonderful. I'm truly hooked now and i believe that my tysabri is the reason for me feeling so good.

Hi there! I am no longer using Tysabri. I had 26 infusions that took me from feeling awful and loosing my ability to walk to feeling great and walking fine! My neurologist had talked to me about it because I was unable to tolerate any of the CRAB injectable meds. I stopped using it when I suddenly got freaked out about PML. Having had 26 infusions made me frightened. I did not use any meds until just after Christmas 2010. I am now taking the oral med. Gillayna.

If I were able to restart Tysabri, I would have. That's what a great job it does. Hope I helped! If you would like to ask me any questions, please do.
Chrissy

ichoppel.......
I didn't realize the Tysabri worked like that, I thought it was a slow over time reduction in lesions and relapses.

But, are you saying that you actually feel better right after the infusion, and when it about time for the next infusion, you start to feel bad again?

It makes me wonder....how does this drug work to make you 'feel' better?

Very interesting....I am gettin ready to start my first infusion

Relyonhim:

" I didn't realize the Tysabri worked like that, I thought it was a slow over time reduction in lesions and relapses." I BELIEVE IT IS SUPPOSE TO STOP THE PROGRESSION OF THE DISEASE, JUST LIKE THE CRAB DRUGS. SOMEONE WITH MORE KNOWLEDGE MIGHT CHIME IN HERE FOR RELYONHIM?

"But, are you saying that you actually feel better right after the infusion, and when it about time for the next infusion, you start to feel bad again?" YES, FOR ME THAT IS HOW THE LAST 2 MONTHS HAVE HIT ME. I FEEL BAD BEFORE THE INFUSION, THINKING THE MEDICATION IS WEARING OFF, AND WHEN I WALK OUT OF THE INFUSION I FEEL 100% GREAT. i'M JUST LEARNING HOW MY BODY DEALS WITH TYSABRI, BUT FOR THE FIRST 6 INFUSIONS, I WAS ALWAYS SLEEPING AFTER THE TREATMENT. THEN, ALL OF A SUDDEN I HAD A BURST OF ENERGY RIGHT AFTER THE INFUSION THAT LASTS ABOUT A MONTH.

"It makes me wonder....how does this drug work to make you 'feel' better?" I HAVE MORE ENERGY AND LESS DEPRESSION FEELINGS. MY WALK IS BETTER. I'VE HEARD OF SOME FOLKS WHO ARE WHEEL CHAIR BOUND BEFORE TYSABRI AND WITH THE MEDICATION THEY HAVE BEEN ABLE TO GET OUT OF THEIR CHAIR. I'M STILL OFF BALANCE, BUT NOT AS BAD AFTER THE INFUSION. AGAIN, THIS IS ALL NEW TO ME, AND EVERYONE REACTS DIFFERENTLY, BUT FOR ME I'M REALIZING THAT TYSABRI MAKES ME FEEL REALLY GOOD AFTER THE TREATMENT. I HOPE THIS CONTINUES. GOOD LUCK.

Reply #22 &23,
Reylon & ichoppel.

i didn't notice myself dragging just before the infusion for the first year which concerned me because everyone else said they did. but after 2 years i did too, funny thing is my sister notices i'm dragging just before my infusion and will schedule stuff after my infusion.

of course i have a theory for everything, if not a theory a working theory or hypotheses. the way i believe ty makes a person feel better right after the infusion and feel like they are dragging or need their tysabri is like this....

I was an engineer with further training in computer science.

i believe its like the difference between an analog & digital signal.

the microwave is a digital signal. you punch in the time it turns on and stops at the end of the time. an "on/off", digital digital signal.

but the oven is more like an analog signal, a throtteld ,apmplified signal. you turn the dial to what temperature you want the oven to go--then allow it to heat up to cooking temperature. cook something. turn the dial off. the oven cools down.

but hasn't it ever happened to you that you walk by the oven an hour later and its still warm when you know it should be cool? you check that dial again and you turned it down but you didn't turn the dial all the way off.

so this time you get it to the off position and this time the oven cools down like it should.

MS is more like an analog signal than as digital. before the MRI's were available, they believed that ms was a purely episodical disease. the disease was active when a relapse was occurring and symptoms were present--and not active at all when symptoms were not present.

with the MRI they were able to see lesions and learned that damage was going on even when symptoms were not present.

but the mri's vision although much better than before it existed is still limited, it doesn't see the neudegenartive damage of the progressive stage and it doesn't do a real good job at showing the tissue being damage before inflamation cause a lesion to show...

See,
"Its just the tip of the ice berg" by dr. timothtyu volomer
http://www.mscenter.org/images/stories/InformsSummer09lowres.pdf

for what i mean about the mri & past ms beliefs.

End result of my theory on this..
1. MS is an analog disease not a digital disease.
2. when getting tysabri, the analog dial for ms is lowered, a person feels better, nothing turns it off,. but it is lowered. During the month since the infusion the dial goes up until the infusion lowers the dial again.
.
3. ms is a tiring disease, do you realize the nervous system consumes the most energy of any body system, more than even than muscles.

as the dial goes up through the month, the nerves have to fire more often to get a signal through. which becomes more noticable through the month. the nerves have to fire less often to get a signal through after the infusion for those that ty is working well for them.

just my working theory.

my next working theory: the packers are gonna win this afternoon.

!!!!!!!!!GO PACK GO!!!!!!!! :)

I cannot ever go on Tysabri. I had to go to ER because I was so bad with hives. Never even got a full infusion. Will never go back. Glad that some people are doing well on it. Best of luck, Malvina.

Re Aldez64 and Rebif,: I got worse symptoms from Rebif (anxiety and depression) and 3 days a week instead of just one from Avonex. Also, the scar tissue from subcu injections have left a lot of scars versus none from the intra shots from Avonex. So I will stay with Avonex. The scar tissue did not show up until after I stopped taking Rebif. The tissue becomes hard AFTER you stop giving yourself injections. At least that is what happened to me. I was on Rebif for years and I have a lot of scars to show for it unfortunately.

nnyl1, I like your analogy re digital and analog. I studied in electronics so I understand what you are talking about. I think that all diseases are analog. Real life is analog, but at some point in the analog process, the disease makes a difference in symptoms and it may feel like an analog step. So the progress make make feel more like steps because the analog has increased its momentum and we notice a real difference in our life when a step crosses over a line. But if Tysabri makes everyone feel great, more power to you. Wish I wasn't allergit.

Re the Packers, my cognitive difficiency wanted to say Six Packers instead of Green Bay Packers. So I just gravitate toward the beer analogy. I do not care one way or another who wins. Hate football. But hope you have fun watching them. Great distraction from MS.

Dear All! Thank you so much for your response; Sharing your own experience and providing me with information! I found your support extremely helpful and am grateful for that! ;0) XXXXX