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lee P

Tysabri/Gilenya

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Christina

Hi guys

 

I saw my MS Nurse yesterday, and I've been given two dates to start Tysabri (whoop) - 18 December or 22 January! Am tending towards the 18th, but am a little nervous as it's the week before Xmas and I will still have plenty to do. We discussed the fatigue that can come as a side effect, and my nurse said it can last up to 2 wks after the first few infusions. What have been your experiences so far? Any info would be muchly appreciated.

 

Cheers

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Slugger

Hi guys I've just started onTysabri, have had no side effects, haven't noticed any changes but still early days.

Comiong upto my second infusion in a week.

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Hezza

Hi Chris,

I can't help regarding side-effects but wanted to say that I'm glad that the ball now seems to be rolling on this for you xx

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Life is short. Eat dessert first. Jacques Torres

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PTN

Hi Chris,

Thats wonderful new Chris.

 

Just off for my 7th infusion today. A week late as the nurses had to go to a Tysabri conference last week but apparently you can be a week either side of your due date without worries.

 

As with MS, everyones experience with Tysabri is unique. Any side effects I have experienced over the last six months have been short lived and after my first infusion I had a similar boost as you get with steroids. Personally, I wouldn't say that it would ruin your Christmas, probably quite the opposite, but I understand your caution to start so soon before the holidays. My feeling would be to start as soon as you can. Expect a day or two of fatigue directly after the infusion while your body accepts the new drug and then look forward to a relapse free holiday and a very happy Christmas and new year.

 

Worth noting, no one on my course has had any adverse reactions from the beginning, just a patch of fatigue but we're all used to that anyway aren't we :-)


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PTN

Chris,

 

I thought i'd add that the worst of my fatigue (nothing like a relapse fatigue) was after two or three months when my body was able to start repairing itself properly. Hope that helps.

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Sleepy
Scully

Hello Chris,

 

Great news that you can start the Tysabri so soon. I guess we can only go on others experiences, and they all seem to be pretty positive thus far.

 

The very best of luck with it

 

Scully

x

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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derby42

Great news Chris,

as you know i have no knowledge and can offer no advice but i do hope this works for you, its been a long road eh?

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derby x

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Christina

Thanks everyone, I think I will go ahead with 18 December. Unfortunately, due to my stupid foot drop I fell flat on my face when out walking today and broke my right wrist. What a b****y nuisance. It's rather taken the gloss off my Tysabri news!


Not waiting for the storm to pass, but learning to dance in the rain ....

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Slugger

Hi Chris sorry to hear about the fall hope it heals up soon.

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Sleepy
Scully

Oh Chris,

 

Poor you ! I fell a few years ago and broke my right wrist as well, thankfully it healed quite quickly, so I really hope yours does as well. It's a real pain with the plaster.......makes shower and bathing interesting !

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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lee P

Hi Chris, great news about your dates for Tysabri, not so great about your wrist - ouch ! Your right hand one as well. Sorry to hear about that.

I agree with you, you should go with the 18th december. The sooner you start the sooner you can benefit I reckon :-)

I found that I felt very tired for a couple of days after the infusion but then I was back to normal. Saying that I do feel that my balance has improved and I've had 4/5 days where I have felt great with much increased energy levels. And it's only been 3 weeks although it feels like a lot longer. I've got my 2nd infusion next wednesday, fingers crossed things will continue to improve.

Good luck !

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Hezza

Oh what a nightmare, Chris. I hope it isn't giving you too much pain and heals quickly for you.

 

:hugs2:


Life is short. Eat dessert first. Jacques Torres

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mustard

Oh no Chris, sorry about your wrist! Fingers crossed (or maybe toes....!) that the tysabri will help prevent such ms related things in the future.

You already know my thoughts on the tiredness, but will reply here for the sake of joining in on the thread.....basically that I've had no bad side effects from tysabri apart from the first infusion when i got very tired during it and it lasted a few hours. Good effects kicked in around the third nfusion.

I have however had a never ending cold, about 6 weeks. Not seen the ms nurse, but the infusion nurse suggested maybe its coz of the weakened immune system. I'm unsure though because tysabri only suppresses a very specific part of it, which I'm doubtful is the one that fights colds. I dunno tho! I just know I'm fed up of being blocked up.


RRMS, diagnosed 2010

Surprise baby due 31.7.13 - never been more excited!

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Christina

18 th December is looming fast, and I admit to being a little scared and nervous. Wish me luck guys!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Sleepy
Scully

Hello Chris,

 

I'm sure Tysabri will have you feeling heaps better in no time at all ! Judging by the others on here who have started it and never looked back.

 

Good luck for Tuesday.

 

Scully

X


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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lee P

Good luck for your 1st infusion Chris but you dont really need it as you'll be fine.

Up until a few weeks before I admit I was worried about it and starting to think of pulling out but realised that there wasn't really any alternative. I'm very glad now that I didn't. Things have certainly improved since I've been on Tysabri.

I'm having my 3rd infusion on the 19th so hopefully things will continue to improve. Just hope she doesn't need 3 attempts to put the cannula in this time as the last time hurt :-(

Don't worry Chris, just look forward to the improvements your going to have.

Lee

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Procrastinating
Stumbler

Treat it an an early Christmas present. :xmas:

 

:goodluck:

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Sluggish
Marina

Lots and lots of good luck! :hearts::goodluck::hearts:


Marina

(belated DX in June '05, SPMS)

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angela

Heaps of good luck Chris, look forward to hearing how much better you feel.

 

Angela


Give a woman the right shoes and she can conquer the world! Bette Midler.

 

 

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Christina

Thank you all so much.

 

I will let you know how it goes. My appt is at 9am tomorrow, so not too much time to hang around nervously fretting.

 

Merry Christmas everyone!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Hezza

Hi Chris,

I hope that all goes smoothly tomorrow and that Tysabri turns out to be a good match for you xx


Life is short. Eat dessert first. Jacques Torres

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Christina

First infusion was straightforward. I was out within 2.5 hrs.

 

How do I feel? Certainly not as tired as I imagined, didn't need to go home and sleep. In fact I put the vacuum round, and took the dog for a short walk. I did have a headache which is still around today. Nothing awful, but niggling and I can control it with regular pain relief.

 

I will keep you posted on how things go for the next few days, as it might interest others.

 

By the by, a lady I was next to, on her third infusion asked me if I had heard of CCSVI. She told me she had been to Edinburgh for treatment, paid £8000 and she felt worse than ever! Her advice to me was to keep my money in my pocket. She was also very annoyed she had paid for a follow up MRI included in the £8000, and had contacted them about it, but never heard anything back.

An interesting experience and the first time I've spoken to anyone face to face who has had CCSVI.

 

Just to say thanks again guys for your support.

 

Chris x

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Not waiting for the storm to pass, but learning to dance in the rain ....

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derby42

hi Chris.

I've been rather quiet lately but i was aware that you were going in. Im so pleased it seems to be going ok for you and thanks for letting us know, it is helpful you're right. please keep updating us,

 

my neuro actually mentioned tysabri when i saw him recently so i think it may be a possible treatment for me in the future. how ya feeling now?


derby x

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Christina

Hi again all

 

Just a quick update. I've been having worsening of my usual MS symptoms for over a week. It was starting before my Tysabri infusion, and I was feeling a bit low with sore throat etc, but nothing to stop Tysabri going ahead. Gradually things have cranked up over the last few days. Burning pain and MS hug is much worse, and I feel really exhausted. Was worried this might be due to the infusion, but I think I might be a recurrence of shingles, which will be my third time in 2 years! It affects my left ear, and I had a sore ear a few days ago. Now I notice tiny blisters again! Again, it's happened after a few weeks of being off Copaxone, so I've left a message for my MS Nurses and hope to talk this through soon. It certainly makes me feel poorly, but I need to be sure Tysabri isn't causing this. What a nuisance!

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Procrastinating
Stumbler

Chris, that's a shame to be feeling like that at this time of year.

 

The period leading up to Christmas is stressful for most of us, but the prospect of a first Tysabri infusion as well may have cranked the old stress-ometer up to critical.

 

Let's hope you start to return to normal, as we all do, now this annual event has passed.

 

Best wishes

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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