NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

Victor H 05-07-2008 01:14 PM

Katt,

It seems that my only issues have been associated with UTI's, and that is when my MS symptoms beat me up a bit. But, after a few pounds of Cipro, I am good to go and back on track.

-Vic

Riverwild 05-07-2008 09:36 PM

Quote:

Originally Posted by billh (Post 271627)
Hello,
New at this, wondering how everybody is doing on Tysabri? I am trying to get started but have alot of unknowns about the drug.. Some of your posting are great. I would like to know the best and worst of this drug. Been on other drugs not doing well on them. I hate shots:mad:

Hi Bill and welcome to NeuroTalk!

If you read the whole thread, you will find a LOT of information.

I think that once folks get started and see benefit, they post less frequently and come back when they have problems or questions, or to update as to how it's going for them.

For me, it's been over one year since I had a relapse. I was a serial relapser before Tysabri. The best part of the whole experience for me has been NOT having relapses. In the interim I haven't had any progression either. I have regained my vision ( normal now), balance, no more vertigo or dizziness, no rotating eyeballs, less spasticity and stiffness (although that is still a problem) and less fatigue.

I'm not cured, no one is, but I FEEL a lot better since I started. I will have my 14th infusion this month and I am thankful every day for Tysabri. I love the once a month infusion rather than daily/weekly/etc. shots. I haven't had any adverse reactions or events.

Good Luck with whatever you decide! Come on back and let us know how it goes for you regardless of whether you choose Tysabri or not!:)

Riverwild 05-07-2008 09:41 PM

Quote:

Originally Posted by wyldkatt (Post 274659)
hello, I am new to Neuro Talk and was hoping there might be many here who have been on Tysabri for a year or more and can help me figure out if this is just me or not.

I have had 14 infusions and Tysabri has been very good at slowing my MS down, but lately I am starting to feel as though the initial effectiveness might be starting to decrease?

Just wondering if anyone else have noticed an increase in their rate of flares, symptoms, or disease activity after having a good long remission on Tysabri?

I think this concern was triggered by my recent flare. It was the first since starting Tysabri, and mild when compared to my previous flares, but makes me worry anyway.

Thanks for any related experiences! I hope I put this in the right spot, was gonna start a thread about it but saw the Tysabri sticky...

Hi Katt and welcome to NeuroTalk!

I haven't had a relapse or flare since I started. I can't give any advice as to that, I still feel good.

I do know that even with Tysabri you still have relapses. They are less frequent and milder for most people. Everyone is different. You should talk to your neuro and if you ARE relapsing, a dose of steroids may help. You CAN have steroids, just not long term steroid therapy, such as pulse therapy.

Please come back and let us know how you are doing, ok? I hope things improve for you!:hug:

wyldkatt 05-07-2008 09:54 PM

Quote:

Originally Posted by Riverwild (Post 275115)
Hi Katt and welcome to NeuroTalk!

I haven't had a relapse or flare since I started. I can't give any advice as to that, I still feel good.

I do know that even with Tysabri you still have relapses. They are less frequent and milder for most people. Everyone is different. You should talk to your neuro and if you ARE relapsing, a dose of steroids may help. You CAN have steroids, just not long term steroid therapy, such as pulse therapy.

Please come back and let us know how you are doing, ok? I hope things improve for you!:hug:

Yes, I just finished an oral course of prednisone. I was hoping the whole time the pills would do the trick so I could avoid IVSM.

Luckily they did, or the Tysabri kept the flare short if not sweet, and I did not need IV steroids. I am coming out out of it slowly now.

Before Tysabri I had 4 MAJOR relapses a year and was worried I would be stuck in a wheelchair...those fears stuck with me and even though I knew Tysabri was not a cure and I would still have exacerbations this first one since has been hard for me to deal with. Even though I was only reduced to cane, then walker, and am now ok without assistance for short periods again.

It is mostly me being silly, borrowing problems and not looking at the big picture. Discounting the positive in my worry and fear. :o

Thanks for the responses!

Riverwild 05-07-2008 10:10 PM

Quote:

Originally Posted by wyldkatt (Post 275122)
Yes, I just finished an oral course of prednisone. I was hoping the whole time the pills would do the trick so I could avoid IVSM.

Luckily they did, or the Tysabri kept the flare short if not sweet, and I did not need IV steroids. I am coming out out of it slowly now.

Before Tysabri I had 4 MAJOR relapses a year and was worried I would be stuck in a wheelchair...those fears stuck with me and even though I knew Tysabri was not a cure and I would still have exacerbations this first one since has been hard for me to deal with. Even though I was only reduced to cane, then walker, and am now ok without assistance for short periods again.

It is mostly me being silly, borrowing problems and not looking at the big picture. Discounting the positive in my worry and fear. :o

Thanks for the responses!

There's never any need to apologize here for worrying!

We all understand the unknowns of MS and how we can be doing so well and look so good one day and then the next be on the floor!:mad:

Glad to hear the steroids helped!:)

I know eventually I will have another relapse and I dread it! Life has been so good lately, I forget sometimes I even have MS and THAT in itself is a miracle!

wyldkatt 05-07-2008 10:15 PM

Quote:

Originally Posted by Riverwild (Post 275131)
There's never any need to apologize here for worrying!

We all understand the unknowns of MS and how we can be doing so well and look so good one day and then the next be on the floor!:mad:

Glad to hear the steroids helped!:)

I know eventually I will have another relapse and I dread it! Life has been so good lately, I forget sometimes I even have MS and THAT in itself is a miracle!

YES, I was fortunate to have a few days like that over the past year!

I think that is what has me freaked again, not ready to go back to more bad days yet! Did not do enough with my good days...but I suppose we never do in retrospect...

Ah, that is more a discussion for another thread though...

RedPenguins 05-07-2008 10:56 PM

Tysabri while on antibiotics?
 
Well, I've got a killer kidney infection (or so we think that is what it is?!) - and I'm on my second course of antibiotics (did 1 week and that finished on Monday. Today, Wednesday, I'm starting a 5 day course of something else).

Question - my Tysabri infusion is on Friday....will this be a problem??

Thanks!

~Keri


ps/I know I need to call my neuro to ask....but I don't wanna (pronounce: i-donwannu....like a 5 year old!)

wyldkatt 05-07-2008 11:00 PM

Quote:

Originally Posted by RedPenguins (Post 275156)
Well, I've got a killer kidney infection (or so we think that is what it is?!) - and I'm on my second course of antibiotics (did 1 week and that finished on Monday. Today, Wednesday, I'm starting a 5 day course of something else).

Question - my Tysabri infusion is on Friday....will this be a problem??

Thanks!

~Keri


ps/I know I need to call my neuro to ask....but I don't wanna (pronounce: i-donwannu....like a 5 year old!)

I still got my infusion while I had a UTI, bladder AND kidney infection. I think it is left to individual doctor discretion.

Be careful though, the main antibiotic used for this is Cipro, as Victor mentioned earlier, and it has a MAJOR drug interaction with Zanaflex/tizanidine, a common MS symptom med.

Victor H 05-07-2008 11:02 PM

Quote:

Originally Posted by RedPenguins (Post 275156)
Well, I've got a killer kidney infection (or so we think that is what it is?!) - and I'm on my second course of antibiotics (did 1 week and that finished on Monday. Today, Wednesday, I'm starting a 5 day course of something else).

Question - my Tysabri infusion is on Friday....will this be a problem??

Thanks!

~Keri


ps/I know I need to call my neuro to ask....but I don't wanna (pronounce: i-donwannu....like a 5 year old!)


My guess is that it will be an issue, and you will have to delay the Tysabri infusion for a while. Like Katt said, talk to your TOUCH Certified neurologist about it.

-Vic

sheena 05-08-2008 06:10 AM

I'm with Vic, my guess is they will put it off till you test clear of infection. Good Luck


All times are GMT -5. The time now is 03:38 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.