Tysabri and Quality of Life

[Echo2099]

I have motice in many post about Tysabia that the treatment has increased the quality for life for some patients. However, I would be interested in how you are gaging the improvement. What has changed since you started Tysabri? How long before you expereinced improvement?

Would you consider it mild, moderate, or fairly major improvement. Any improvement in gait, balance, fatique, strenght or cognitive issues?

How about those that have seen no increase in QoL? Any other benefits you have noticed?

Any improvement in gait, balance, fatique, strenght or cognitive issues?

Any insights woud be appreciated.

[REG53]

Hello Ecno,

I have been on TY for 70 mos. I have not seen any improvements in my sx's but my mri's have remained stable, no new lesions and I haven't had any relapses and for that I am grateful.

[dalechilders51]

QoL

Echo, I've been on Ty for 5.5 years. I had been on all the DMD's and was continuing to go down hill. Since starting Ty I have stabilized and my experience is similiar to Reg53. I'm not getting worse so I can have a hope of getting better.

[Scooter24]

Just had # 32 on Tuesday, previously on Avonex and copaxone and felt like absolute crap while on them. I noticed an increase in energy and generally over all improvement how I feel. I have had no no lesions and some have shrunk to a point where they are no longer visable.

I am a needle weanie so the once a month IV is great. It took me about 6-7 months to feel the difference and to stop jonesing for my next dose 5 or 6 days before it was was due.

This last one was the best I have ever had, am on a TY high at the moment, had it on tuesday, cooked all day wed and again on Thanksgiving, played 18 holes of golf this morning and then went christmas shopping from about 3 to 830 (I was using my scooter for that) it's now 1245am and I am still wide awake and not really tired.

The combination of ty and ampyra have had a major effect and other people can see and notice the difference. I started the ampyra about 2 weeks after starting TY.

[ru4cats]

Boy, Echo2099, I agree with what everyone else has said. I've had 31 infusions, my new MRI is due Dec. 3, and I'm stable with Tysabri and Ampyra. I continued to see a negative progression with my right leg weakness, but just recently, I realized I was no longer "sliding downhill". I would be thrilled if where I am now is where I remain. I would love to see improvement, but I'm not going to count on that. I'm mobile, able to walk the dogs, exercise, swim, and most importantly, walk through Costco, my favorite store. Life is good!

[lindaincolorado]

Hi Echo, I was going downhill that stopped immediately with Tysabri. Between 4-6 infusions I had better balance, more stamina, at 7 mths my MRI showed no new or active lesions - as time went on the old lesions got smaller and some went away I will have #75 Thurs!!

I socialize as I want, live alone ... QOL

[Dingbat]

What was JCV test results here?

This thread makes me want to do this.
The ball is rolling on this, but I can back out.
Indecision.
I'm afraid.

[Scooter24]

I am positive JCV and have had prior chemo treatment for cancer 3 1/2 yrs ago.

[ru4cats]

I've had 3 tests and am JC- and holding. However, my only risk factor would be the number of infusions I've had. However, even if I was positive, I'd still choose Ty. It is the most effective treatment for MS at this point in time.

[HarrisQ]

I wish the Tysabri stopped the progression of MS for me. No flare ups but disability progressively gets worse. I just had my 59th infusion and during this time I've gone from needing no assistance walking to needing a walker to barely get around. I probably should be using a wheelchair but can't bring myself to that defeat yet.

[Tomjadg]

I'm at #20 and am positive.

The only plus is my MRI's remain stable, although I get continually worse with walking and balance.