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

    Sarah's Tysabri Diary

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    Name: Sarah
    Age: 20
    Occupation: student - currently studying for a degree in biomedical science.

    First symptoms: Dec 2004
    Diagnosed: Dec 2006
    Type of MS: relapsing / remitting
    Previous treatments: Avonex (April 07- Oct 07), steroids (2 IV 1 oral)

    My first symptoms (before referral to neuro) were:

    *       numbness in both thighs and my neck.
    *       balance and mis-coordination problems,
    *       pins and needles when I flex or bend my neck
    *       strong burning sensation in my face up to 20 times a day
    *       recurrent UTI's
    *       fatigue
    *       headaches every day

    other symptoms since referral to neurology:

    *       severe numbness and stiffness in both hands
    *       MS hug (tight and numb around torso)
    *       numb lower legs
    *       trouble initiating passing water
    *       balance and coordination is now significantly worse
    *       sometimes walk with a limp (where one or both of my legs drag and are uncoordinated)
    *       optic neuritis symptoms in right eye
    *       numb lady parts
    *       loss of appetite

    I'm due to start Tysabri treatment on 8th Feb 2008, hopefully it will relieve me from my current symptoms and prevent any new ones occurring or being too bad anyway ... fingers crossed :-)

    Tysabri Infusion #2 - 4 week update

    Today is the day after my third infusion so I think I'd better fill you guys and girls in on what it has been like for the four weeks since my second infusion.

    I didn't have any side-effects following my second infusion, if anything I was a little hyper and overactive.  I don't know what really happens on infusion days but I just know I feel happier once I've had Tysabri, its funny really I think it's just me being relieved that I know it must be helping somehow.

    There have been small changes.  As I've previously mentioned in my first diary entry about my waterworks, I thought I'd let you know now that issue has got consistently much better and I can go for a wee now just as good as I ever could.

    Before Tysabri I did have some numbness in my lady parts and had lost much sensation down there, you could say I was a little sexually dysfunctional :-( , I first experienced this about 1 week before my first Tysabri.  Well now 9 weeks and 2 Tysabri's later and my sex life is back on track and pretty much how it was :-D (Mum, I hope you're not reading this)!

    I did think my hand was stiffening up making it harder for me to write in the first week after my infusion so I went to see my neurologist to talk about possibly having a course of steroids, I wanted to do this to try to ensure that I would be able to handwrite for my exams in May.  However now I feel much more confident about my handwriting and so I'm not going to have a course of steroids (I think).  I don't want to take steroids anyway really because it is kind of cheating as I want to be able to see what Tysabri can do all by itself, as well as not wanting to compromise my bone density and weight by having too many steroid courses.

    I have been so busy these last four weeks and I haven't even had a chance to sit down and think about M.S, this can only be a good sign.

    So in summary I am very pleased with what Tysabri has done for me so far and I look forward to seeing what will happen in the next four weeks following infusion #3 so I will fill you all in then.  Hope you enjoyed reading this, I'll be back in four weeks. 

    Sarah xoxox.

    Tysabri infusion #1 continued - days 15 - 27
    Today is the 06/03/08 the night before my 2nd tysabri infusion so I thought I'd update my diary so you will be able to get an idea of how the full 4 weeks after infusion #1 has been for me.

    I definitely feel better in the mornings as compared to before having tysabri. the mornings are when I have all of my symptoms at their worst, and this is still true but in general all of my symptoms are not as severe as they were before, however not totally relieved.

    I've had no more slight headaches since week one and no weird joint pains since week 2 - I think I've stopped being paranoid about side effects or delayed allergic reactions.

    In my 2 week infusion #1 entry I had mentioned that my waterworks had improved, this is still true but the extent of this improvement has been variable ... every wee is different :-)

    Numbness in my hands, forearms, feet and lower legs is still hanging around so hopefully this infusion will help to tackle that.

    Well I'm still here, no serious and/or life threatening infections to report so now I will go to infusion #2 calm and stress free and reap the benefits by not actually increasing my MS symptoms with the panic of it all. I'm quite excited about it really!

    If there anything exciting to report I'll post it up here in about 2 weeks, otherwise I'll do a full 4 weeks in 4 weeks I guess.


    Tysabri Infusion #1 - days 1 - 14.
    I thought I'd do a 2 week update as otherwise I think I'd forget stuff so here I go...

    On the day of my infusion I was I little bit nervous but felt as though I had got a grip on the PML factor and wasn't worried about it at all really.

    Got to the hospital half an hour early (appointment was at 9) so me and my mum waited to see a nurse on the ward who sat me in the chair on the ward and put the line in for me and took my blood pressure and temperature ... so then I just had to wait for my MS nurse to come in and for the hospital pharmacy to open to make up my Tysabri drip.

    MS nurse came along at about 10.30, had a chat about how I feel in myself and stuff and then connected me up to the bag of Tysabri. The infusion went in over 1 hour. During this time I didn't have any changes or funny feelings to report ... I think I get more symptoms (hot flushes) when I have IV steroids.

    All the staff seemed very laid back about the infusion like it was no big deal, I think this made me feel even more relaxed about it ... if they didn't think there was some big drama to worry about going on then why should I :-) ? Infusion finished, had a quick chat with neuro about my current state concerning MS and then I just had to wait for 1-hour observation after the infusion and that was it off home I went.

    In our chat my neuro said that other people on Tysabri he knows had seen improvements in 7-10 days, this really excited me as I was relapsing at the time.

    After the infusion I felt fine and even went shopping with my mum, maybe a little more prone to feeling headachy but I always get headaches anyway.

    The following 3 days after the infusion I was SOOOO paranoid that I had PML, I had some small aches and pains in some of my joints (hips neck knees and elbows all at different times and changing sides of my body) that lasted a couple of hours each but it still worried me. The MS nurse had given me a sheet of paper saying to call her if I got any of the following symptoms which included joint pains. So I scarred myself silly like it was the beginning of the end for me! I quickly became aware that even just reading this sheet of symptoms gave me an immense headache so I think it was made worse on a psychological basis (the simple thought of PML or some other serious infection) rather than the true side effects of Tysabri.

    By day 5 I felt back to the way that I was before Tysabri with no weird aches and pains. Day 7 came and I hadn't seen any improvements so I felt a little disheartened and deflated :-(

    In week 2 after the infusion on day 9-ish I noticed that I wake up and don't feel like a zombie anymore ... still a bit stiff in my legs though in the morning. I also realised that its not taking me as long to go for a wee when trying to go to the toilet. Before I would sit on the toilet busting to go but it would take half an hour and a lot of concentration for me to go. Well yesterday (day 13) I felt I needed to go, so I sat on the toilet (as you do) and went just like that (almost like a 'normal' person) I can't remember the last time I could do this (apart from when I'm on steroids) so this was a minor MIRACLE  (for me anyway).

    Gradually seeing these small improvements has made me a happier person really I guess, I'm not just sitting around feeling sorry for myself as I sometimes did before :-)

    I have my next Tysabri on 7th of March and I can't wait. I will make another entry for infusion #1 part 2 at 4 weeks so watch this space! hope you enjoyed reading my little essay and that it is of some help to you all. And GOOD LUCK to anyone starting Tysabri.

    Sarah xoxox

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