Thursday, November 8, 2007


Have I mentioned how much I love Tysabri? I have? Well, pretend that you have not heard this before then or go pluck your nose hairs for a few minutes while I rhapsodize about Tysabri. I have been on 3 different meds for my MS before Tysabri (Tie-sob-ree), Avonex, Copaxone, and Novantrone. Avonex was about as effective as water for me. My Ms is too aggressive and it did nothing but make me sick, tired and more depressed--not a good thing. Plus the IM(intra-muscular) shots HURT! After 6 months and 3 attacks my neuro switched me to Copaxone, which I loved almost as much at Tysabri. I did my own shots with my own little Auto Injector and sub-q (sub-cutaneous, just under the skin) does not hurt, in fact a lot of times I didn't feel a thing. The only down side to Copaxone is the itchy injection sites and it has the least reduction in relapses; but no depression or sickness. Novantrone was a hideous experience; it is a chemotherapy. I think that says it all. I was stuck in the house for 2 weeks after because I could not risk getting sick and I lost no hair--what a rip-off! But Tysabri is the BEST! I have not felt this good since before I was diagnosed. There is no depression, it is once a month (you can go a week early or a week later depending on how long it lasts. I go every 3 weeks because I burn through it faster and start getting attack-y after 3 weeks.) it has helped with my fatigue and walking--in short I feel alive again! It is done IV, but that is not a big deal. I have not had an attack since starting it this last February--and that is a record for me; before this my longest time attack-free was 5 months. It doesn't cause depression, or make me sick, in fact I can't think of a down side to it. Wait, I thought of one. They say it is about $27,000 a year, but that is the med alone. Once you add in having to go into an infusion center and all the charges that entails it comes to more like $50,000. A hefty price tag but worth it--it makes life worth living for me again.


Anonymous said...

This is the first time I have heard of anyone on Tysabri being infused on other than a four week schedule. Does the "TOUCH" program allow such dosing? Could you expand on your dosing experience?

Sam in NY

Lauren said...

I have had 14 infusions of Tysabri so far (not counting the one I had in early 2005).

My infusion Center will not infuse me again until the 28th day, although they have no problem waiting until the 29, 30, 31st day or even the following week.

On page 16 of the Tysabri Label, it states: "The recommended dose of TYSABRI® is 300 mg IV infusion every four weeks...".

I suppose that "recommended" and "required" can be interpreted as meaning two completely separate variations, or strict adherence thereto.

In any event, I'm so very happy for you that your MS is now stable, and you have received improvements.

If you are interested in reading my Tysabri experiences, you can go to:

I hope and pray that you continue to have wonderful experiences while on Tysabri, what's not to LOVE about this medication???

All my best, Lauren :)

Anonymous said...

Very interesting new twist: infusing earlier or later, depending on how the body uses. This needs to be followed up with my daughter's neurologist. I suppose if the infusee is not experiencing break-throughs on the 28/29 day cycle of dosages, one should leave well enough alone, but it's still of interest. Thanks for the information.


stephen said...

i'm going for infusion #4 today, and i don't know if it's doing anything or not. i don't feel any worse, but i don't feel any better. whether ty is slwong the progression, or it is slowing on it's own, who knows. i'm glad it is working for you, tho!