About to start tysabri

[saraht79]

Hi all-
I am just writing to  let everyone know that I am about to start tysabri infusions in late June. My neurologist thought that based on the "large lesion load" in my t-spine that Rebif was simply not working for me. Because I am young, and he wants to "give me the best chance" for quality of life he thought tysabri is the best choice for me (despite the risky side effects). I am getting a second opinion from my MS specialist (just to be on the safe side), but I've seen my MRIs and I agree with him. I will be happy to post my experiences or answer any questions that anyone had once I am on it. In the meantime, I am very interested to hear from those that are already on it and their general experiences with it. Specifically, I am also wondering if anyone has been off it for a period of time and then restarted it with no problem (because the reading suggests that you can build up antibodies to it). The reading also suggests that people are more susceptible to illnesses on it - I would like to know if anyone has found that to be the case. Also, my neurologist says their is no data on how often to monitor liver function but that he plans to do bloodwork every three months like he did when I was on rebif. Any thoughts on this? Thanks in advance!
Best,
Sarah

[mae1]

Hi Saraht, I just recieved my third infusion of Tysabri yesterday.
I will tell you that last week I got my first stable MRI report since my dx. my neuro is convinced it's due to the Tysabri.
I had three attacks in a six month period while on the crab drugs.
my neuro is also checking me every three months on liver function.
looking forward to seeing how it goes for you.
april

[doublevision1]

Thanks for posting about Tysabri.  I know little about it but may need to learn a lot more real soon, at the rate I am going.

I was dx'ed with MS 8 months ago, and have had 2 relapses with a 6 month period (Sept 07 and Mar 08).  My symptoms are sensory, fatigue, and double vision.

My neuro is considering switching me from Rebif to either Tysabri or Novantrone.  I started Rebif in Feb 2008, however was not on it long enough to really know if it was doing any good as far as disease progression/relapse reduction, as within 8 weeks my liver enzymes had elevated and my treatment was suspended.  

I just started Rebif again this week on a very gradual titration schedule, and my liver will be monitored closely via weekly labs.  If my liver enzymes elevate again, I will need to go off of it.

My neuro has described my early MS as 'very active.'  Last Sept, my MRI showed 1 brainstem lesion and 1 C-spine lesion.  8 months later my MRI still shows the same brainstem lesion; it does not show the previous C-spine lesion, but does show 3 new lesions on C-spine.  No T-spine lesions detected.

I am very interested in hearing how you both do on Tysabri.  April, your results so far are very encouraging.  Have you experienced any troublesome side effects?

A few questions for you both:  

- How long were you on Rebif (or, for April, one of the ABC drugs) before switching to Tysabri?  
- Did you consider Novantrone?
- When were you dx'ed with MS?

Thanks!

db

[mae1]

Hi doublevision, nice to meet you.
I have had no side effect so far from the tysabri yipeee!!!!!!!!!!!!!
I was on beataseron for a little over a year before the switch.
we did not consider Novantrone.
I was dx. on 2006.
hope this helps....
april

[saraht79]

hi db,
I was diagnosed in 2003 and was on rebif since jan 2004. I also had problems with elevated liver function. They reduced me to a half dose and then bumped me back up to a full dose. I again had problems with elevated liver function. My neuro then decided to keep me on a 1/2 dose (my specialist felt that a 1/2 dose of rebif was roughly equivalent to a full dose of copaxone), which I have been on since late 2004. They thought that the rebif was working well for me because I had no new lesions in my brain or c-spine. However, as I mentioned in my earlier post, I just had a t-spine MRI (my first since getting diagnosed) and it showed extensive damage so that was when they decided rebif was, in fact, not working. I also had an additional active lesion in my c-spine. That is when the subject of tysabri came up. My local neuro says that the most recent data shows that it is more effective than the other drugs (although this is not true of everyone and you have to be careful of how data is "skewed" to make things look good etc) My neuro and I also did not consider novantrone.  I will definitely keep you updated on how tysabri works for me and I am interested to know what your final decision on medication is.
Sarah

[sllowe]

I wish you both the best with this.  I pray it stops the progression dead in it's tracks!

I'm so glad you are sharing this w/us.  

Seems you both have large lesion loads.  Clinically were you progressing as well - more disabling symptoms, etc?

Share if you can.  Sarah, were you on the Rebif for very long before the decision to switch?  Welcome  - welcome.  I know we haven't chatted yet.  Nice to meet you.

Mae - haven't seen you in sometime.  Refresh us!

Have a nice night,
-SL

[sllowe]

Sorry Sarah, remembering a little now, you came on w/MRI info right?...... brain is a bit sloooowwwwww

-SL

[mae1]

Hi sllowe, my neuro decided to switch my to tysabri since my lesion load went from 9 to 15 and of course the 3 attacks in a 6 month period.
sorry I have not been on in awhile, I have had a lot going on with my boy's and trying to catch up at work. I have felt better the last couple of months then I have felt since my dx.
just in the last couple of day's has my right side started causing me problems,   I'm hoping it passes soon.
hope you have been well.
april

[bhack]

I was diagnosed with MS 4 years ago. At that time I immediately went on Rebif after having fun with the spinal tap. Someone asked at one point, "How does it feel to have MS?". I simply stated that when I was diagnosed, it felt like having 5 lb dumb bella strapped to each knee. I felt something different but it wasn't really an issue. Now, it's having 50 lb dumb bells on each knee. Obviously, that brings a lot more to how I handle daily activities. Now my neurologist tells me that I have MS in my spine and I must sit down and speak to her seriously about going on Tysabri. I hope that helps. At this point, I am prepared to try anything.