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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Nicky's Tysabri Diary

    Nicky's Tysabri Diary

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    I come from England, am 43, am married with a school age daughter and have had relapsing & remitting MS for 10 years.

    I've tried a lot of things, both conventional and complementary.

    What works:

    Steroids when things are bad, regular injections of B12 to give me a boost, a neutralising vaccine to make sure I digest food properly and can tolerate chemicals.

    My triggers:

    Pesticides and chlorine all found in the most unlikely places.

    What doesn't work:  

    Betaferon ( made me feel like a space cadet)

    Copaxone ( dreadful and painful injection site reactions )

    Rebif ( affected my liver function dramatically )

    Lyrica ( made my mouth so dry my tongue stuck to the roof of my mouth).

    Where I am now:

    I currently take no medication but will have a course of intravenous steroids when things ( normally my walking) are really bad. I take paracetomol & codeine when my peripheral nervous system makes my feet ache. I regularly take vitamins and minerals and B12 injections.

    If you met me you'd know I have MS. I walk with a stick and where a SAFO
    on my left foot. I stop after 6 - 10 paces and do most of my shopping on - line (hurrah for the internet). My balance is abysmal and without light it is especially bad. My legs are super stiff in the mornings and take exercise to stretch them out.  My left hand does not move as well as the right and my cognitive skills are reducing, I frequently ask the
    same question or act surprised at news I've already been told. I have to see the continence nurse and use a bladder stimulator.

    Occasionally I suffer from MS hug and in the past my eyesight has been affected.

    What am I hoping for?

    I'm hoping Tysabri will stop things getting any worse and will maybe even improve things ( I am an optomist at heart).

    I'm hoping Tysabri will mean my eyesight remains and my walking improves and that I don't have to know where the loos are before I go anywhere. I'm hoping that because it acts in a different way to the interferons it will work for me. I have put all concerns about PML out of my mind.

    Latest Tysabri Infusion Monday 23rd March

    I'm pleased to report I had none of the side effects I had last time - no paranoia, no having to sleep with the light on , no excessive tiredness.  The only issue was getting the drip in - it took four attempts and prior to that it took 40 minutes to warm my hands up, next time I think I'll take a hot water bottle with me in the car to save time!

    The only real change I've noticed in the past month is with my bladder which is far more controlled which is no mean feat, in fact the hardest thing is trusting this new control and not running off to the loo ' just because it's there'!

    I saw my neurologist in the last month, an uneventful meeting. He seemed happy with how things are going on Tysabri. He seemed unconcerned that my walking has deteriorated since I've been on it and happier that I was relapse free.

    Nothing else to report.

    All the best

    6th October, 2008

    Today, Monday October 6th,  I had my first Tysabri infusion...and it's
    all gone fine.

    The most difficult bit was getting the cannula into my skin - I am, it
    seems, a tough old bird.... so it was third time lucky!

    If you are about to have Tysabri, try to avoid having it on a Monday
    as it means at some point in the future you will hit a bank
    holiday...or bank holidays. The sister only told me this after I was
    hooked up and said that when that happens they will have to make
    special arrangements ! Only not sure what they are.

    On reflection maybe a Wednesday would have been better. The sister also
    said she hoped I responded as well to Tysabri as some of the other patients
    she'd had in. She had nothing bad to say about the drug and said one
    of the women on it had recently gone for a ramble without using a stick!

    The day after the infusion I was tired and I've been very thirsty but 
    otherwise no effects, good or bad, but I will keep you posted.

    FYI,  I had my temperature and blood pressure taken but didn't need a
    urine sample. I have already booked my blood test for three weeks time.


    3rd November - 2nd Tysabri Infusion

    Some confusion when I arrived at hospital this afternoon because the ward had my notes but no prescription! Luckily there are around 10 of us on Tysabri now so the pharmacy had some in stock and an hour after I arrived I was hooked up.  It all went well, the hardest thing for me is the position of the infusion ward which is at the end of countless corridors. Just getting there feels like an achievement.  I don't think I'd make it using a stick and so my husband pushes me in a wheelchair.

    I've nothing much to report about the last month. I had one spectacular day,  2 weeks after my first infusion, when I felt fantastic and realised when I typed I was using my left hand ring finger which is normally dormant! Aside from that no real changes. I would say I've experienced more low level headaches than normal ( I  normally don't have any ) and unfortunately my left leg /foot has been worse than normal (very dropped foot) but as you know you can't tell if thats the drug, the weather, the fact that I hurt my knee at physio or just one of those things! 

    One of my MS nurses came to see me whilst I was on the ward and she wasn't worried about any of the above. So onwards and upwards. The one truly good thing I can report is that I feel very positive about the fact I am doing something.

    I'll keep you posted.

    Best wishes


    2nd December - Third Tysabri infusion

    Had my 3rd infusion on Monday but was not feeling good. Have had some
    sort of bug for a few days but obviously no temperature or high blood
    pressure as the nurses were unconcerned and I was hooked up after only
    two attempts to get the needle in! I'm with Jill - the whole event can
    be very boring!

    My MS nurse came to visit me and was surprised when I told her my
    walking had become worse since being on Tysabri and my dropped left foot
    is worse too. I'm having to use my hands to lift my left leg up stairs
    and my fingers are feeling very pins and needles. Don't even mention
    my balance! She seemed surprised but said it can take a while for the
    drug to kick in.

    I am trying to remain positive but after having such bad luck with previous drugs I am concerned - not about PML just about the fact yet another possible option may not work for me.   Sorry if this is not what you wanted to read. My next infusion is between Christmas and New Year so I'll wish you all a very Happy Christmas now.

    Best wishes

    4th Infusion Monday 29th December

    Despite having to go into hospital between Christmas and New Year this
    was an OK experience and much quicker than normal as the ward was so
    empty. Aside from that everything was very normal....blood pressure,
    temperature all fine ....hooked up for an hour and then monitored for
    an hour afterwards. Felt fine afterwards but tired in the evening.

    I'm always asked have I seen any changes ( for better or worse) in my
    walking, balance or cognitive skills...the answer is No but my bladder
    control has improved ( I'm just not asked about that! ).

    Also yesterday I went to my physio who thought my walking ( with a stick)
    was that's idea if that's Tysabri or all the
    exercises I've been doing or a mixture of both.

    My next infusion is on the 26th of January.

    Happy New Year to everyone who reads this.

    Nicky .

    5th Tysabri infusion - January 26th

    I had my 5th Tysabri infusion on January 26th ( how time flies ) & I
    have an appointment with my neuro in March so it'll be interesting to
    see what he says.

    The infusion was delayed because the hospital was so busy and patients
    kept getting wheeled in their beds for a temporary stay in the ward
    where the infusions were given. It made my stay more interesting!

    I've nothing much to report this month, a bit like David, in fact I
    would say my walking is worse and I have pheripheral nerve pain in my
    feet. On the plus side I have had no bad side effects from the Tysabri
    and today I did (not terribly well!) Tai Chi for the first time.

    Best wishes

    6th Infusion - 23rd February 2009

    I had my 6th Tysabri infusion on Monday 23rd February. My drug had been left out of the fridge over the weekend (!) and so there was a lot of waiting around and 'discussions' with pharmacy before I could be hooked up. No problems with the needle position and all in all an uneventful afternoon.

    However, afterwards was quite different....I was  massively tired and fell asleep in an armchair. I rallied to get my daughter's tea but went to bed at the same time as her ( 8 o'clock). I then slept but fitfully and was very paranoid, I wanted the light on, I kept looking at the curtains suspiciously and I was scratching my head. More than a week on my head is still itchy but the weird mood only lasted that evening although for a week afterwards I had some very vivid dreams ( I was interested to read that JIll mentioned dreams too).

    I have also been to see my GP after I caught a mole (with my nails) I had been unaware of before. He put my mind at rest and said it's not a melanoma but I have to go back to see him in 3 weeks. I've since taken photos of it with a ruler alongside (!) so I can keep an eye on it and informed my MS nurse. My GP thought it might have something to do with the Tysabri, my neurologist (via MS nurse) doesn't. I'm due to see him before my next infusion.

    The other bit of not so good news is my left foot is now well and truly dropping and the MS nurse thinks it's possible I've had an attack. For a couple of years now my attacks have not been as acute as they were originally and consequently my nurse seems to think I disregard things others would count as an attack and that it's possible I need steroids. I'll keep you posted.

    On the positive side the tai chi is going well, I've just realised I'm typing with both hands and this evening I managed a ski ing exercise on the wii fit that had previously been impossible - my daughter is still better than me but I'm not complaining!

    Best wishes

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