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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Donna T's Tysabri Diary

    Donna T's Tysabri Diary

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    Donna T

    Name :   Donna
    Age :   29
    Live :   Isle of Man
    Occupation :  Office Manager for family Computer Firm

    First Symptoms: December 2000
    Diagnosed:  January 2004
    Type of MS :   Relapsing / remitting

    Previous treatments:  Copaxone May 05 – May 07
        Rebif May 07 – Sep 08
       IV Steroids approx 5 times over last 5 years.


    First symptoms :  Numbness in hands

    Symptoms now: Constantly numb hands
       Really bad balance
       Extremely poor co-ordination
        Fatigue


    Occasional problems: Extremely heavy legs
       Drop foot (use a 'foot-up' when this happens and occasionaly a stick when really bad)
       Burning sensation on right hand side of face
       Bladder control
       Right eye 'paralysed' (have to move my head to look to the side)

    I was taken off Copaxone as my Neurologist decided I was still having to many relapses whilst on it.  I was changed to Rebif, and although I didn't have any relapses, I was in the last 9 months having severe injection site reactions, which resulted in site infections and scaring.  I was taken off this in August 08 and was told about Tysabri. I was initially extremely worried about the PML factor and didn't want to have the treatment but after talking to my family, boyfriend and reading these diaries  I have decided to bite the bullet so to speak and give it a go!

    I am currently awaiting for my first infusion  appointment to come through, which according to Heidi, my MS nurse, should be very soon now.

    If it works half as well for me, as it has for others, I'll be one very happy bunny! :)

    I'll keep you posted!

    xDx

    Update 27/04/10

    I had forgotten all about this diary, so I do believe its time for a update!

    I've lost count of how many infusions I've had now, I think 13 or so.

    Everything was going fantastically well up until the start of January and then I went and broke my ankle! :s  I will not be going out to play in the snow EVER again!! lol  I ended up in hospital for 5 days, I broke both bones, dislocated the ankle and tore all the ligaments!  So you could say I did a proper job on it!  And I am now the proud owner of a metal plate and 10 pins to hold it all together!! Up until that point I had almost forgotten about the MS as my condition had improved so much.

    Anyway a week after that, my partner woke up one morning to find me fitting in bed beside him.  I was rushed back up to hospital, obviously PML being a big concern at the time. On arrival I had a temp of 104, which indicated I had some kind of infection.  After the fit, I wasn't allowed another infusion until I'd had an MRI Scan and My Neurologist had checked it over.  I finally had that at the end of February and thakfully everything is fine, no signs of PML and no new legions on my brain since my last MRI. So I got the go ahead to restart with the Tysabri, and not a moment to soon!  2 months of no infusions and I was really starting to struggle again.  Very tired all the time, grumpy etc.  So since then I've had 2 infusions and things are already getting better again.

    Now all I have to do is re-gain flexablilty in my foot/ankle and I can get rid of my walking stick again and get back to forgetting that I have MS for all but one day of the month!

    5th diary update for Donna T

    My 5th Infusion happened on Tuesday 14th and went perfectly smoothly! :)

    Had quite a good time actually, had a lovely chat with my infusion buddy and had a laugh with the nurses!

    Been feeling pretty good this month, apart from the few days before the infusion when I just seem to be pretty grumpy and tired, my body's way of telling me that I'm due my next infusion I think! 

    The only problem I have had this month is with my bladder.  I've recently started on the Cambridge diet, which is going great, but the amount of water I'm having to drink is really causing problems. Up and down to the loo all day long, and the urgency can be quite alarming!  Fingers crossed it passes quickly (pun intended!) lol

    My sisters and boyfriend who took part in the Parish walk last month managed to raise £255.00for the MSSociety Isle of man Branch.  They all did a fantastic job!

    Next infusion is on 11th August.  Until then!

    xDx

    4th Tysabri infusion

    I received my 4th Tysabri infusion on Tuesday 16th June.

    It should have been 2 weeks earlier, but catching a chest infection threw that idea right out of the window.

    Other than feeling rough when I was ill, I've been otherwise really good this month.  Energy levels have been pretty stable, and I have been feeling fine in myself.  The last week before I had the latest infusion was a different story, but then I was 2 weeks late with my 'fix', so I'm not too worried about that.

    My latest infusion went really well. And now, thanks to the chest infection and being put out by 2 weeks, I now have an infusion buddy! :)  So the infusion doesn't seem to boring now!  Infact I was in and out within 2 hours and 15 minutes this month.

    Also, this month I made arrangements to get a lift home after the infusion as I was feeling a little 'fuzzy' after May's infusion.  Well, no such problems this month, so back to driving myself to and from infusions in the future.

    This coming weekend is the Prish Walk on the Isle of Man where I live, ( http://www.parishwalk.com/ ).  My 2 younger sisters Dawn and Rachel and my boyfriend Aaron are all taking part this year to raise money for the MS Society, so I wanted to give them all a huge shout out and wish them all the very best of luck!  :)  I'll let you know how they get on next month!

    Anyway, thats about it.

    Next infusion due 14th July.

    Take care
    xDx

    Update 06/05/09
    I was a little disapointed this month after infusion number 2 as I didn't have a amazing energy rush like I did after my first infusion.  But other than that, I've been well!  No headaches, or reactions to report.

    I had my 3rd infusion on Tuesday 5th May.  As with my first 2 infusion, everything went smoothly, and to my delight not a drop of blood was spilt this time! :)  The only thing I did notice this time after I got home from the infusion was that I was getting extremely light headed.  I felt like I was on a ride at the fun fair!  I seem to be okay today though, but I will be keeping an eye on it and if it happens again I'll mention it to Heidi my MS Nurse.  But yeah, other than that I'm doing okay!  Fingers crossed things stay that way! :)

    I hope everyone else is doing well! :)

    Will report back again after infusion number 4 on 2nd June.

    I would love to talk to others on Tysabri, via e-mail, you can contact me on [email protected]

    xDx

    Update 14/04/09

    The month since infusion number one has been fine.  No nasty reactions to report.  My energy levels however have been greatly improved. To the extent that after a full day at work I now have the energy to go for a walk with my boyfriend.  Not a long walk, only to the shops and back, but a walk never the less! I'm not sure if it's the Tysabri doing its thing already or the fact the sun had come out, so I'll  wait and see over the next couple of months how I get on before I declare Tysabri a miracle drug!

    Infusion number 2 was on Tuesday 7th.  Again everything went smoothly, apart from the loss of (in my opinion) a hell of a lot of blood when the doc putting my cannula in forgot to put the cap on it! lol  No excessive tiredness etc to report. I was in and out within 2 and a half hours this time, a big improvement on infusion number one!

    My next infusion is booked for Tuesday 5th May!

    I hope everyone else is keeping well and that Tysabri contiunues to work for you!

    xDx

    1st Infusion - 10th March 2009

    WOOHOO!  Finally had my first infusion yesterday and it went perfectly!!! :) 

    I arrived at DATU (the Day Assesment and Therapy Unit) where I am receiving the infusions at about 1.50, and had the cannula put in by this lovely little old Doctor (lovely because he got the cannula in first time! lol).
    They started the infusion at about 2.20, after going though all the blood pressure and temp checks etc. and triple checking everything and started it off at about 10% of the normal speed just to check I was going to be okay with it, and I was! The infusion finished at about 4.10, then they flushed it through to make sure I got every last drop of the Tysabri, then I had to sit there untill 5.20 whilst they 'observed' me! LOL   Everything was fine!  I felt fine during and after!  no headaches, excessive tiredness or anything else to report.  Infact I don't even have a bruise where I had the cannula, added bonus as I normally bruise after anything like that. :)

    The girls there are lovely, and Elizabeth, the nurse who sat with me for most of the afternoon was fab, really put my mind at rest.

    Just have to keep fingers crossed it works now! :)

    Will report back next month after infusion number 2!

    xDx

    Update 08/01/09
    A quick update, for all of those thinking that I still haven't done any!

    I came off Rebif on the 4th September 2008 after having severe injection site reactions and was told about Tysabri which I agreed to try.

    To cut a long story short, I am still waiting for my first infusion!!!

    It turns out that because Tysabri is so expensive the hospital on the Isle of Man have been having meetings etc to determind if I actually really need this drug.  This morning I received an e-mail from my MS nurse to say that yes the hospital now agree that I need it - Great!  Then I read the rest of the e-mail which said the hospitals decision now had to be approved by the Health Minister! 

    To say that this whole ordeal has been stressful is an understatement.

    So in short it's now been 4 months with no medication, and I'm still having to wait!  This Tysabri had better be worth it! lol

    Has anyone else had to wait this amount of time?  I honestly thought that I'd have received it within a month, 2 at most after my Neurologist
    said I could have it!

    Anyway, I hope my fellow diriests had a lovely Christmas and wish you all a Belated Happy and Healthy new Year!

    xDx

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