What is your guess - kept on or off Ty
 

1st Infusion I had 2 sides - rash (1 day nothing to speak of ) and swelling of the /feet/ankles/
2nd infusion I had 2 sides - rash (now getting better but turned as some do ) to a burn, a lot more swelling of the feet/ankle/leg ( left). It was bad, but I controlled with Benadril. Almost back to normal 1 week later
BTW - swelling is listed in the IV handout as a side

Since the sides on the last infusion were much worse then the 1st time, I have left message with neuro. If next time were to be worse then this, I would have to go to ER. I'm not scared of the sides as long as neuro knows. This is the pro ty neuro.

What is your guess? Will he pull me off ty or let me stay on.

Sheena, Are you presdosing with benadryl? Have they tried giving you an iv of benadryl prior to infusion. Do these side efects happen during the infusion or after?

Hi my name is Crystal, I just introduced myself in the Newby forum. I have been dx'd since Feb 2005. I have had HORRIBLE MRI's in the past so they started me on Ty in June 2007, I thought it was my miracle drug and was doing awesome on it, until Feb 2008. I have had extreme pain in my legs, numbness in arms/hands/legs, spasticity (this is new never had it before), memory loss, vertigo, insomnia, and depression.

Am I the only one who has relapsed while being on Ty? I go see a new neuro on Wed and I hope he can spread some light.

I also quit working in March and am filing for LTD and SSDI. UGH! This seems like a great board!

Hi Barb, yes presdosing with 2 benadryl - no on the iv. Sides start almost exactly 26 hours after infusion.

[QUOTE=sheena;268088]1st Infusion I had 2 sides - rash (1 day nothing to speak of ) and swelling of the /feet/ankles/
2nd infusion I had 2 sides - rash (now getting better but turned as some do ) to a burn, a lot more swelling of the feet/ankle/leg ( left). It was bad, but I controlled with Benadril. Almost back to normal 1 week later
BTW - swelling is listed in the IV handout as a side

Since the sides on the last infusion were much worse then the 1st time, I have left message with neuro. If next time were to be worse then this, I would have to go to ER. I'm not scared of the sides as long as neuro knows. This is the pro ty neuro.

What is your guess? Will he pull me off ty or let me stay on.[/QUOTE]

Sheena, you should be direct with your neurologist about the prospects of using another medication if Tysabri is causing problems. I suggest strongly that your neurologist keep as many avanues open for you as possible.

Keep us posted.

-Vic



Crysal, you are not the only one who has had an exacerbation while using Tysabri. There are many folks for whom Tysabri just is not helping. Be sure to discuss alternative medications with your neurologist on Wednesday. Let us know how it goes.

-Vic

Thanks Vic!!!

Have the others had an improvement and then went downhill like me? Or did it never work for them? Thanks!

Some have had improvement and then relapsed (had an exacerbation or two) when on Tysabri. Many of these folks changed medications or are still searching for an appropriate mediction.

Some folks had immediate negative reactions and only used Tysabri one or two times.

The majority of people seem to be doing well on Tysabri, but we have to keep in mind that all MS medications will produce different results with different people. Additionally, Tysabri is still very new, and long-term performance data are lacking (which is why Biogen is sponsoring a new long-term study to evaluate Tysabri performance).

-Vic

CBo,

While in a relapse, you should expect to go downhill for a while. If it is spinal lesion attack, it often takes as much as 3 months to MOSTLY recover (6 weeks of "exceleration" and 6 weeks of "recovery").

You are not necessarily progressing with this disease, and that is the important factor!! No matter how bad my spinal lesion attacks have been (and I have been paralyzed twice), it doesn't mean that we won't get back most of your function by the time it is over. I know it doesn't feel like it at the time . . . but most times things do improve substantially.

Don't get too discouraged yet!

Cherie

(ooops, let me clarify . . . I am not on Tysabri, and those attacks were 12 yrs apart. I was just generalizing about attacks, no matter what meds we do or don't use.)

Thanks Cherie! I am getting discouraged because I have never been down this long. Usually I have a flare and am back going in a month. I just wish Wed would hurry up, I can't wait for my apt!

Hi Crystal and welcome!!:)

I'm sorry to hear you are having a relapse. It must be even harder to deal with after such a long period without any!

Despite my success with Tysabri, I still keep in mind that relapses do occur on every DMD, including Tysabri. You are not the only one who has had a relapse while on Tysabri. The reports are usually that the relapses are of a shorter duration, but not always, and it sounds like you are in the "not always" category.

Having an MRI may help you and your neuro decide to where to go from here. I hope that whatever you decide that you get some relief soon. Please update and let us know how you are doing! :hug: