Tysabri

[Cammie1111]

Are any of you on Tysabri?  My doctor has suggested that I consider starting Tysabri treatment.  His neurology practice runs a TOUCH infusion center.  I've been on Copaxone for four years and have just had my first flareup.  My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe.  Several of the older lesions have increased in size.  Five years ago I was on Avonex.  I had multiple flare-ups the whole year on this med.  

I'm concerned about the PML risk associated with Tysabri.  However, I'm also concerned about the new lesions, their location, and the possible disability they cause or may cause in the future.  If you are on Tysabri, how did you decide to go on it, to take the risk?  I'd appreciate any insight on this.

Thanks,
Cammie

[SarahL2491]

I take steroids before every Tysabri infusion.  I tend to think you would have to be on a ton of them for it to affect PML

Also to everyone else, I asked the Tysabri rep at a recent Tysabri dinner about the "holiday" and they say they do not recommend it.  There is no benefit in it.

[SarahL2491]

I'm JC+ and on Tysabri.  The success rate of no new flares is up to about 92% and is encouraging.  It's only every 28 days.  The only people authorized to administer it have undergone training and are TOUCH centers.  There are also hospitals trained in it.  My neuro is one but my summer TOUCH center is a hospital and is in their outpatient section.

I don't think I would trade procedures, even being JC+.  Every drug has a risk and PML is the only one associated.  No one on ONLY Tysabri has come down with PML, only those on TWO or more drugs.  Go to Tysabri's website and download the Patient Information Sheet and read it.  

The nice thing is that its not considered under your regular "drug" section of insurance but under outpatient procedures........

hope this helps

[Nicky0714]

I was in the exact same situation as you. My lesions were increasing and I still had the fatigue that went along with MS.  Ive been on Tysabri for almost 4 years with no flare ups.  For having MS, I feel great.  I used to get monthly blood work to check for PML and would take 2 to 3 month "holidays", just so my body wouldn't be over exposed to the Tysabri.  (It lasts in your system for up to 3 months). I recommend Tysabri to anyone that has MS.  It beats daily self injections, and its only once a month.

[Guitar_grrrl]

Hi, Cammie,

I failed Rebif after 2 back-to-back flairs.  It also gave me hives.  I started Tysabri in February, and had my 2nd infusion 2 weeks ago.  I haven't noticed a big difference, yet.  I have quite a bit of fallout from my last flair, namely, my inability to play my guitar for more than about 20 minutes.  I've had to quit performing for the time being.

I have a crazy strong immune system, and therefore not at huge risk for PML.  I'm not so worried about that as I was before I started Tysabri.  I may be going through a minor flair, right now as my spasms have increased over the past two weeks, but I won't take steroids while I'm on Tysabri - not a good combination, as steroids are immune suppressors, and leave me at higher risk for PML.  

One nice thing about the TOUCH system, is the nurses ask lots of questions about the use of steroids, illness, and any other changes in the 4 week interval.  As long as this possible flair is mild, I'll ride it out.  If things get ugly, I'll consult my neuro - a complete winner in my book- and see what he has to say.

Best wishes for your decision - I know this is scary.  It sounds like your MS is galloping along.  I know you'll inform yourself, and go from there.  

Cheers,
Guitar_grrrl

[sllowe]

Hi Cammie!

We have a few on Tysabri. Adding on to Debs bump in hopes they see this.

Welcome to our forum.

-Shell

[Deb61]

I'm not on Tysabri, but want to bump this up so that your message doesn't get lost.  My sister is on Tysabri, which she's been on for two years now.  Her MS is not behaving like someone that has RRMS, as her MS is more like a train that keeps barreling down the tracks and is unable to be stopped.  

She was on Rebif for a year and she experienced a sharp decline over the course of the year.  She started Tysabri, and her disease has slowed, but it's by no means stable. Throught the course of her treatment, she has needed to go off of it for at least two times because of infection--I believe both were bladder infections that she couldn't get rid of.  She tells me that she does feel better after she gets her treatment (more energey, etc.), and her body will tell her when it's time for her next treatment (about a week before the next scheduled infusion).  She is still unable to walk, but her MRIs aren't showing progression.

I can't get on Tysabri, I don't think, because I have latent (inactive) TB.  I would think that the Tysabri may cause me to get the full-fledged TB because of how it lowers the immune system, so I've never even considered it.

There's others on the forum on Tysabri, so here's a bump for them to read your post . . .