Starting on Tysabri soon

[mtngl]

I start on the 23rd. A little nervous about how my body will react to it, but ready to go!

Mtngl

[ru4cats]

mtngl,
Best of luck on Tysabri. I was diagnosed a year after I retired from teaching after 28 years. I've only been on Ty, and I absolutely love it! I look forward to #24 on June 1. I'm JC-, but even I was +, I'd still choose to remain on Ty.

[Michelle1970]

My dr wants go tysbari I'm scared about this cause pml I was on 2 other meds, not helping.

[kimik1]

Hi Mtngl and Michelle,

I was on Rebif from diagnosis last August until January, when I had an exacerbation with a new spinal lesion. At that time, my new neuro and I decided to go to Tysabri; too much to risk and too much to lose to not go for the best medication currently available. The risk of PML exists, but is very small, and the potential benefits to me outweigh the risks.

I have now had four infusions, and so far, I LOVE it. I have had not a single side effect, and I feel SO much better than when I was on Rebif. I was committed to Rebif, believing it would be my savior medication, but when I had breakthrough disease activity, the need to change became evident. I'm so glad I made the decision I did. I have seriously considered (of course) the risk of PML, and have concern about it, of course, but feel like I really need to do everything I can, be on the best available medication, to have the best chance!

Good luck to you both. I hope whatever you choose, you will be comfortable with your decision and that your MS will be slowed or stopped in its tracks!

Take care,
Kim

[RingpOP]

My story on going on to Tysabri is pretty similar to Kim's.

I was diagnosed 8/30/10, I started on Avonex late September of that year. I swore by Avonex... the side effects were hard at first, but I adapted and learned to pre-medicate before shot... and take it close to bed time.

However, from my MRI in March of 2011, to my MRI in November of 2011, there were 4 new lesions. I had noticed some new symptoms, that's why I went to my neuro with it... but I wasn't expecting new lesions. I just thought that my MS lesions were aggravated.

Thus, I started Tysabri January of this year, and I just went for my 5th Infusion last Thursday. I love it, I'm JC negative, but even if I was positive I would of still chosen Tysabri. The benefit, for me, out weight the risks. I have no side effects with Tysabri and I don't have to worry about remembering to take my shot.

Although I'm JC negative, my neuro has scheduled me to routinely checks for the JC virus.

Best of luck!

[mtngl]

Thanks for all your feedback!

Believe me, reading about your experiences and feelings about Tysabri and other meds for our MS helps a lot.

My head is definitely overwhelmed based on dealing with how I feel everyday, as well as venturing into new Tysabri territory.

Take care and I look forward to reading more about how things are progressing with your Tysabri experiences.

Best wishes,

Mtngl

[CougarMama]

I was diagnosed in 2003 and have tried Avonex and Copaxone. About a year ago I had the worst flare to date and it scared me! I felt something fundamental had changed with my MS. The doctor couldn't see it but I could feel it.

I started on Tysabri 3 months ago and am happy with my decision.i did get headaches after the first infusion and have had some fatigue (but what else is new,) I'm JCV - and feel this is my best option right now to avoid continued flares and progressing disability. Only time tell if it is the right choice but so far, so good!

I'm planning on getting tested for the JCV virus every 6 months and a yearly MRI. If I turn +, I will have to determine my comfort level at that point. Hopefully that won't happen anytime soon!

Good luck in your quest for answers!

[KyleW]

Tysabri is the only DMD I've used. I've had 6 infusions with the 7Th coming up on Saturday. All have been completely incident, side effect free!

It now takes less than an hour and I love not having to deal with self-injecting. The PML risk is pretty small. The way I understand it you have to test positive for the JC virus AND be immunodeficient, as in have something like HIV. Luckily I tested negative for the JC virus.

Kyle

[Jac126]

1st infusion was Monday

Had my first infusion Monday and I'm so happy we made the decision to switch. Diagnosed 12/6/10 treated with Avonex until February 2012 when I just stopped. Sick and tired of being sick and tired from medication just couldn't take it anymore. My husband helped me research tysabri and once we found out I'm JC- the decision was easier to make.
Excited and nervous we arrived Monday. Have an amazing infusion nurse and it went off without incident. I did experience extreme migraine that evening (normal for me to have one anytime I have a stressful day) but after meds for it, I am happy to say I feel amazing for me! Even went to my sons golf match yesterday, first time this season! I hope this energy is something i continue to experience!
I did take the advice to hydrate and was so happy I did!
Hope you have an amazing experience for your first infusion!