Tysabri benefits positive differences?

[sunshine008]

Hi all

I was here years ago, been off sight for few years. Had been doing well or at least I thought so. 😊 Was on ldn, had MRI done last month I was over due. Tons new lesions and all in frontal lobe. My neuro went on orange level alert, set me up for tysabri said we had to attack it aggressively or I'd be disabled. I kept ignoring my symptoms leg pain, delayed speech.

Infusion first one was rough, tons side effects. I'm two weeks out and just now am having few good days here and there.

Yet I know it's early on but besides ringing in ears from infusion and side effects haven't seen any improvements.

Anyone have any tysabri improvement stories to share?😊😊

[lindaincolorado]

Hi sunshine,
I have been on Tysabri for 10 1/2 years After 6 infusions I saw less fatigue, more stamina and best of all progression halted. My QOL was better as were my MRIs, no active or new lesions and then some of my old got smaller and some disappeared. I fired 2 neuros who wanted to take me off Ty because they were covering you know what because of the rare possibility of pml-at the time there weren't jcv tests. Because I have been on Ty so long and am in the jcv indeterminate range, I get infused every 8 weeks.
Good luck

[ru4cats]

I'm with Linda, and second everything she said. I start my 8th year with my next infusion and have begun the process of extending my infusion schedule. From what I've observed, infusions provide the best efficacy for those with MS. Definitely give Tysabri at least 6 months for it to reach a therapeutic level in your blood. At 65, I feel I'll always be on a DMD; going without is just not a risk I'm willing to take.

[sunshine008]

Thank you for that. I'm struggling on this and it's hard to have that motivation to move forward on it. I just popped prednisone in hopes to lower the ringing in my ears. Spent am in er because was dizzy naseous all night. They took blood, treatments lowered all my vitamin levels. So it's been a rough run.

Do you mind me asking why every 8 weeks? They have me on 28 day cycle. I think my biggest fear is ringing getting louder with next infusion.

[lindaincolorado]

I went to every 8 weeks because after being on Tysabri 2 years pml can rear it's ugly head and there haven't been any cases reported of pml on an 8 week dosing schedule.