kelli quits tysabri

I recently quit Tysabri, and explained why. I'd like to find others who've had the same experience.

Category:

People & Blogs

Tags:

• MS
• M.S.
• multiple sclerosis
• kwazykelli
• kelli
• health
• infusion
• disability
• disabled

[neo2120]

Hi Kelli, my name is Tim and I just seen your youtube post. I have MS as well, I've had it for about 6 years now and I have a lot of the same issues that your having, numbness, cant write because I cant feel my hands, can barely walk and if I dont have anything to keep me up like a wall or a grocery cart...something to hold on to I will be hitting the floor. Oh btw it ended my marrige too...

[brannray]

I hate that it isn't working for you. I'm on Tysabri at the moment, though I am secondary progressive and it has seemed to work until recently where I haven't been able to have it like I should have every month where they are switching me to a closer infusion place certified to do Tysabri. I'm praying it will start to work again, but right now I can't do anything. It's really horrible too where I have my 2 year old that always wants mommy to play with her when I can't. =(

[Alexknobsob]

That's the way it goes. I've cut out coffee, meat, dairy products, biscuits, smoking and alcohol, just live on fruit, veggies and tinned fish and 2 litres of water a day. Now my body is less of an industrial site. Monthly acupuncture sorts out the dead nerve-endings that cause parasthesia, and the slide is less quick.

[jamielynnmounce82]

I guess I am like you...an odd ball. I started on Copaxone June of 2010. From June until December or January, I had 6 post injection reactions (tightness of the chest, trouble breathing, dizziness, throbbing back pain) . Other than the post injection reactions, I think it is a lot better than the Rebif b/c it has less side effects (when I am not having the reactions). Now they want to put me on Tysabri which I don't want to do b/c of the risk of PML. I hope the Copaxone works for you!

[RODEMOM77]

Kelli, thanks for sharing~Debi

[nmyatkins]

Sorry you are going through this. I started Copaxone in 2008 and so far so good. Only 1 major relapse and approx 2 smaller ones, but nearly full recovery. Please keep posting on how Copaxone goes -

[astronautsandwitch]

Did you get my email?

[MrMDM2007]

Hello Kelli and Others,

I've been on Ty for 8 months. What is important for all MS people to remember is that MS is progressive, period. Since we all are progressing in some fashion, it's going to occur whether you are on drug A or drug B. The hope is that the progression slows down to the point you feel it is not progressing.

I have to say that Ty has changed my life, in that I do not worry about needles nor about shot side effects. That's good enough for me. Wish you the best, Dave

[crazyvicky124]

Can u have kids when ur husband has ms

[65barbiedoll]

While we're on the subject of ominous infusion goo, have you considered Novantrone? The persons I've heard about it from experience remissions of about five years.  Still a major immune suppressant, but that's what we have to choose from. There's also Gilenya, if those side effects don't scare you off.