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marajade
2 months ago

I am with you! I just had my second Tysabri infusion and I’m finally starting to feel like I can do some things during the day without feeling exhausted. Feel energized soon!


rachschader93
2 months ago

Thank you! Glad you’re doing well.


grandma
2 months ago

Hope all goes well for you🤞


mamawals
2 months ago

I’m supposed to start Tysabri this week too. What is the Amantadine for?


stumbler
2 months ago

@mamawals , Amantadine is a prescription drug, which may help with fatigue. As with all things MS, it might not work for everybody.


rachschader93
2 months ago

I fought my insurance for provigil but I sadly lost. I’m hoping the amantadine helps. I literally cannot stop thinking about sleep. Its really depressing. I used to be a really active person, fat, but I got stuff done. I also have OCD and my house was always clean, and not I look at a mess and do not care, want to, but my energy levels don’t allow me to care. I have hit a point to where I’ve been having 2 relapses a month. So im tired, mentally and physically. Hoping I can start recognizing most of myself again soon. I know the medicines won’t fix or cure me but I’m hoping I get better than I am. On top of everything also I have 3 young children and I am not being a mom. I’m here but that’s about it.


brando
2 months ago

Hopefully tysabri will help bring some stability into your life, it did wonders for me.

Best of luck

Brando.


highlander
2 months ago

I wish you all the best.
Keep smiling!


mamawals
2 months ago

@stumbler thank you for the information. @rachschader93 I’m in the exact same boat with three little ones, which is part of the reason I agreed to go with something much more aggressive. Hopefully you get the relief you’re looking for!


rachschader93
2 months ago

@brando I remember you saying that in another post. Glad it’s doing well for you! @highlander thank you sir! I’m trying to. @mamawls thank you. I hope it does well for you do too. Cause this right now is not cutting it.


stumbler
2 months ago

@rachschader93 , good luck for tomorrow. Hope it goes well for you.


rachschader93
2 months ago

Thank you @stumbler. I’m just anxious for tomorrow to hurry and come already.


dvtrv
2 months ago

@rachschader93

Hi,

I’ve been on Tysabri since March 2011 n taking Amantadine for a month or 2 now.

Instantly, Tysabri improved everything, walking, not falling, speach…….

But now I’ve had to say goodbye to my old mucker, Tysabri.

Been 3 cases of PML in my area. An MRI cannot detect PML, in my case anyway.

Been every 8 weeks for a while, maybe a year, not sure and became positive for JC Virus 2015.

From the “advice” off my specialist I chose to take heed and switch to something else.

“” Because, Dr’s, Specialists and nurses aren’t in a position to advise, suggest or instruct you what “they” feel you should do.

I asked my specialist whether he felt I should come off Tysabri and his response was good enough for me to decide to switch.

Had my lumbar Puncture last Wednesday and now waiting.

Tysabri!!! How I will miss you, you’ve done me proud


dvtrv
2 months ago

Wish me luck with Mavenclad would ya?

Good luck to everyone on everything and try to stay positive. Well
We can but only try sometimes can’t we. 💋


rach_schader
2 months ago

@dvtrv thank you for you talking about your experience. I’m wishing you the very best luck switching. Since you have already taken ty maybe you could answer a question for me. I saw on a Facebook post that she couldn’t take steroids. I haven’t seen or heard anything like that. Is this true?


dvtrv
2 months ago

@rach_sander

I wouldn’t know about Facebook or about steroids either I’m afraid to say.

Apart from Ty n Amantadine I’ve not had a need for steroids.

Maybe @stumbler may be able to assist or someone.

Good luck in your quest


stumbler
2 months ago

It would appear that there is an interaction between Tysabri and methylprednisolone (steroids), which could increase the risk of Progressive Multifocal Leukoencephalopathy (PML).


rachschader93
2 months ago

So what would one do in the case of flair/relapse?


stumbler
2 months ago

@rachschader93 , Steroids make no difference to the ultimate outcome of a relapse. They just make that outcome occur sooner. 😉


rach_schader
2 months ago

Ahh I see. So in relapse we really don’t need steroids? I mean they are helpful in encouraging one to get well faster but one doesn’t absolutely need them.


stumbler
2 months ago

@rach_schader , that’s correct.


rach_schader
2 months ago

@stumbler I thank you for your words of wisdom. You really are a big help, not only to me but to everyone. I have learned so much from alot of your responses. I really am grateful for your knowledge. You seem to be better than Google at times. If Google or research doesn’t give me answers or I don’t look in the right place, I know you will find out the answers for me.


stumbler
2 months ago

Thank you, @rach_schader . 🙂


rach_schader
2 months ago

@stumbler any time.

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