Reactions to going off Ty

[moolk]

Yesterday I asked my neurologist about going off Ty and what I could expect. He said that it would be a very rough 6 months. (I'm waiting for BG-12 because I'm JCV+)

Anyone gone off Ty? What was your experience?

[hunterd]

I stopped it, and I didn't have any reactions good or bad. I had to stop it because I build up antibodies to it so maybe that had something to do with it. Hopefully someone else will chime in. HAPPY NEW YEAR

[dalechilders51]

About 2 years ago I missed about 3 months of infusions because of insurance problems. By the second month I noticed worsening of symptoms. This continued until I had been back on Tysabri for several months. Hope you have a smooth transition. Dale

[okhoney]

Last winter, after deciding that I was tired of catching every time of germ or virus that floated by, I stopped Ty. After 4 months of Copaxone I developed double vision. I had an MRI and was immediately started on a 3 day course of IV steroids because my brain 'lit up like a Christmas tree' due to to enhancing lesions. The steroids cleared everything up and I started back on Ty the next week. It is now 6 months later and my last MRI showed no enhancing lesions and was described as stable. I am also anxiously awaiting the release of Bg 12. My Neuro thinks that it will be March. Fingers crossed!! I was told at my last appointment that 4 months until a big relapse was beginning to look typical.

I hope that they release Bg12 soon. A combo of non-immunosuppressant, no needles and no life threatening side effects sounds great to me!

[bentvalve]

I know everyone is different, so symptoms can be different. I have been off for 3 months..I was taking 25/50 mg prednisone tabs in 1/2 once a month..

As far as issues my joints seem to be stiffer,having pain in my eyes,my vision keeps changing,the spacity is horrible,I'm having breathing issues, so bad I can't move. I used to just have the burning pain in my shoulders down,now I have a strange spot on my back that burns.it feels like I'm on the verge on full on body spasm at any turn... Full on tired all of the time,I'm eating adderal just to stay awake..I'm not trying to scare u but, I did not have these issues for this long while I was on Ty. Ty was an awesome drug, the 1st to stop my inflammation. I'm really hoping that I get on something soon..don

[moolk]

bentvalve,

Don't worry about scaring me...I like your honesty about the situation. I hope things get better for you!! Are you waiting for a new drug? I can have 6 (possibly 12) more Ty infusions and then I think I need to change. I'm just trying to prepare myself for the time between the drugs.

I wish that I had a magic wand to wave over all of us MSers that would bring some peace.

[rickalex2]

I've been off Ty since then end of October with no problems so far. (Knock on wood!) I know if I have to find something else and soon but praying that BG-12 will be approved SOON and I won't have to go to something different first. Praying my body will hold out until then!!

[bentvalve]

Yeah, my doc suggested I wait for bg-12 to be out and used for a year. Until then I'm waiting for ritaxan..this is really the worst I have ever felt since I was diagnosed. I try to forget I have ms, but at times it creeps up to let me know its still there.don