Tsybari

[SometimesCrazy]

I had my first dose Thursday. I am feeling tingly in my legs. Especially my bad side. Almost like nerves are trying to fire up again or I'm super spacticy. My dad had a stroke, my brother in law passed, financial and marital strain, my GP closed her practice. How long before anybody saw ANY type of changes and what were they for you?

[Jesmcd2 CommunityAmbassador]

Hugs SometimesCrazy I feel bad that your going thru all this! 😟

I hope things get better for you soon! 💕

J🌠

[Juleigh21]

I had had about 6 doses of tysabri before I started noticing some positive changes. More energy, less spasticity-tingling etc. I just had my 28th dose. Good luck! I think it’s pretty good stuff!

[SometimesCrazy in reply to Juleigh21]

Thank you. Please Lord give me the strength. ☺

[Kenu]

I was on Tysabri for seven years and did Great 👍 Would still be on it my when I got Cancer I was forced to change 🙁. Now on Aubagio and doing great 👍. Good luck and hope it works out for you 👍🙏🐾😉 Ken

[SometimesCrazy in reply to Kenu]

Thanks!!!

[Fancy1959]

Sometimeszcrazy, it's Fancy1959. When I was on Tysabri, it took me 5 to 6 months to start to see improvemen. Then by the 7th month improvements were steadily climbing and I felt really really good. Just remember that everyone's disease is different and everyone's reactions to new and different therapies is also different. The only reason I got off of Tysabri was that I was JC virus positive for the virus and my virus count was starting to go up a bit. On top of that my husband was throwing a fit and was scared to death about the possible brain infection it can cause. I hope this helps and I look forward to talking to you soon. Until then please take care and remember not to stress over this therapy. Stress alone can make everything much less affective. Please remember that together we are stronger!

[SometimesCrazy in reply to Fancy1959]

Thank you so very much! Gosh you would have thought that since EVERYTHING takes ten times longer with MS why would I think three months tops. I used to conquer mountains quickly. Gotta get a grip. Thanks Again xxoo.

[Raingrrl]

I was on Tysabri for 5 years. It kept me very stable but I had to go off of it because I'm JVC+ and my index kept going up. I don't actually look for improvement on any of the drugs. I consider it a win if I stay stable. I was diagnosed 19 years ago and have been stable except for when I gave myself a 'vacation' from Copaxone. Turned out that was a really stupid thing to do.

[Jozzi in reply to Raingrrl]

Hello raingrrl, I am so glad that you have been stable, that is GREAT!! May I ask what happened when you paused your dosage of Copaxone? I look forward to your response.

Jozzi

[Raingrrl in reply to Jozzi]

Hi Jozzi ! When I gave myself the Copaxone break...it was much longer than I started out to do but I struggled with the idea of doing the daily shots again. After many months on my ‘break’, I had a damaging flare up. My normal symptoms worsened and it gave me new symptoms too. The new symptoms were all kind of tied together and included severe vertigo, weird hearing sensations, nystagmus and additional fatigue and balance problems. This was probably around 10 years ago. The nystagmus stuck around and gives me grief every day. The balance problems come and go. The fatigue remained at the level caused by the flare up. The vertigo and hearing sensations remitted completely.

Such a weird disease!