tysabri

[cincin]

Hi I start tysabri next week for my first infusion. I have had the blood work done for 2 years and I am neg. for the JCV virus, so I do not have that worry. The Dr said I am a good one to take this, I was on Avonex and 4 weeks ago it just stopped working and I had a real bad flareup, lost sight totally in one eye. I was wondering if anyone that has been on it is sorry they started it, or are you doing better with it? I will try anything my walking got terrible in just the 4 weeks, it was scary how fast it went. Thank you

[0485c10]

No regrets. It was my walking that was declining fast also, that caused my neuro to advise me to switch. 3 years later i cannot believe how it was..she was doing time walking tests with me..haven't seen on of those in a long time.

response was variable for me for the first 6 months, there would be a day it was great then the next day it was back to not so good. emotional rollar coaster. at about 6 month for me its got preedictible and slowly began improving and holding the improvement. read the baseline concentration can take 6-9 months to establish, for me it was 6 months so be patient with that--you won't regret starting ty.

i can relate about that 'it was scary part', i bought a manual w/c just in case i didn't have time to get one when i needed it.PLUS it was on sale at the hardware store i went shopping in. so i didn't actually go looking for a w/c..it was on sale and i thought this might be a good thing to have one around, just in case & just in case looked like it might happen for a while before i started ty..

[lindaincolorado]

Hi cincin, I have had 65 infusions and no regrets! Actually very thankful to Tysabri for halting my progression, giving me great MRIs and a better QOL.

Being jcv- is a really good thing.

Best wishes and good luck on your Ty journey

[ru4cats]

I will have my 21st infusion this coming Friday. Ty is the only DMD I've been on, and I started before I knew I was JC-. I absolutely LOVE this drug and recommend the video's by Timothy Vollmer in this link
http://www.mscenter.org/videos
He gives a great overview of all the drugs and basically says Ty is the best if you're JC-.

I agree with everything 0485c10 says in her post. Check out the postings by Blackcross who has just reappeared in the forum. He's been on Ty since 2002 and has never had a flare. That's 9 years! My walking was also what finally led to the MS diagnosis. I'm still walking (abeit with trekking poles in the woods), but I'm walking on my own in town and stores. I did purchase a three-wheeled rollator, but I have yet to use it, and I really do attribute this to Ty. I'm still hoping for improvement, but I'm willing to accept "stable". Good luck and enjoy your 2-3 hour "vacation" while you are infused. I relish my time.

[CougarMama]

Hi! I'm getting ready for my first infusion as well (on March 13.) please update so I can hear how your first infusion goes!
The main message I have heard is to hydrate, take a Tylenol (maybe a Benadryl) and something to keep you occupied while at the clinic.
Good luck with infusion #1!

[REG53]

Hello cincin,

I have had 61 infusions and no regrets, no relapses and good mri's. I have remained stable.

Hope your TY journey is good.

[Andy75]

Tysabri - Not For Me

I started Tysabri about a year ago. Thankfully, I have had clean MRIs since. Unfortunately, I have developed two new symptoms.

Prior to starting, I didn't have any physical symptoms, but now I have spasticity in my toes and difficulty walking. I experience the symptoms that I had pre-Tysabri more frequently.

I have met many patients who have had amazing results with Tysabri. I feel like it wasn't the best choice for me. I have tested neg for antibodies, so my doc wants me to stay on it even though I feel my condition has worsened. I looking to get a second opinion.

[MSSINCE09]

Staying on it

I have had 19 infusions of tysabri. Before Tysabri I was having a flare every 2 months. After starting the Tysabri the flares slowly tapered off to every 3 months, every 4 months. Now I have not had one in 4 and 1/2 months and crossing my fingers that I can go longer.

I still have Symptoms every day. Some days are better than others. Somedays I feel like I can conquer the world and others like today I feel like staying in bed.

It has helped alot with my walking. I used to limp almost every day. Now I have trouble walking about 7 days out of the month.

So has it helped? I feel yes and no. It has kept the flares at bay and I think that, that is the most important for me. Good luck to you, and I believe it was cougarmama who is getting ready to start as well. I hope you both find improvement that you can be happy with!