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

    Melissa's Tysabri Diary

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    Melissa: Aged 26

    Diagnosed: August 2007

    Not currently on any medication.

    MS History:
    I first realised that there was something wrong approximately 18 months ago. There were several occasions when my right leg had given way and I collapsed to the ground. I kept telling myself that I was just being clumsy, but after the third fall I was told to visit my GP. I was admitted into hospital for tests and several months later I was told that I had MS.

    I soon noticed that I was struggling with my grip as well as my walking.

    Since then I’ve had my good days and bad days. I’ve had 4 known relapses in the last 12 months- each time receiving IV steroids- methyl-prednisolone.

    Recently I have had no problems with my grip, but I do struggle with my mobility. I am currently using crutches to walk about outside, however in the house I manage to get around using the furniture as support if needed. My right side is still the main problem. At times I find it difficult to move my right leg but small exercises seem to help.

    Tysabri was mentioned to me by my consultant as he thought that the MS was progressing too quickly and that Beta Interferon would have no effect. I am quite nervous about beginning the treatment, especially after reading about Diane’s bad experience and also the 2 new PML cases. However I also feel excited about how positive the results could be.

    Infusion number 10. 28/4/09

    All seems to be going well for me regarding the treatment. I still can't believe the difference it has made to my life over the last few months. To people without MS this wouldn't mean much- but I actually managed to have a normal night out with friends at the weekend- it was a fantastic feeling.

     The only slight problem that I have noticed is a headache the week before I'm due my treatment. It goes away pretty quickly and I'm not even sure if i's related to the Tysabri but I mentioned it to the doctor anyway so we can keep an eye on it.

     Good luck to everyone!!!

    Infusion numbers 8 and 9.3/3/09 and 31/3/09

    Everything seems to be going pretty well for me. The infusions have been going without a hitch (touch wood!)- well apart from the fact that my veins are difficult to find. I keep telling the nurses that I want a tablet form but they think I'm joking!

    I can most definately see a difference in myself over the last few months. I'm hardly using my walking sticks now- really only if I'm walking longer distances. I love the fact that my friends and family are constantly commenting on how well I am looking- and that makes me feel even better!!!

    Good luck to everyone!!!

    Next infusion 28/4/09.

    Mel. x

    Infusion number 1 - 19/8/08
    I arrived at the hospital for my appointment at 11am. I was asked to do a water sample- but I was already prepared!!!! I had my temperature and blood pressure taken- which was a bit high - probably due to my nerves and the walk from the car. I sat for a while and then the nurse put the tap in. I had previously been to this department for IV steroids and was remembered for my awkward veins. After the second attempt I was ready to go. I finally saw the doctor and had to complete a small test. This was to check my short term memory- I think I was more worried about this!!!!! Blood pressure was checked again - no problem there.

    It was 1pm before I was actually hooked up to the Tysabri. This was fine- no reactions. The only things that I noticed were that my head was a bit heavy and I became slightly tired. I was disconnected from the infusion at 2pm and had to stay to be monitored for an extra hour. No visible symptoms at present. FINGERS CROSSED!!! I will post a diary entry in a couple of days to keep you updated.

    Mel. x

    Update after 1st infusion 27/8/08

    Well it's been a whole week since I've had my first infusion.

    At the moment I don't feel any different. Although at times I do feel more tired than usual- but I can't be sure if this is due to the Tysabri. I've also been extremely thirsty over the past few days. I am just thankful that I am not experiencing any bad side effects.

    Roll on 16th September,

    Mel. x

    Infusion number 2 - 18/9/08

    It's a good job I arrived slightly early for my appointment. There were two of us waiting for an infusion, and only one lot of Tysabri. The other patient was asked to go home and return the next day- I couldn't believe it. I would have been fuming if I'd been sent home.

    Anyway, everything seemd to go fine for me. No reactions during the infusion and the only apparent side effect now is that I'm very tired. I haven't noticed a great deal of difference since I've been on the treatment, however my husband does seem to think that I'm improving slightly. I've just got to be patient and see what happens.

    Next infusion 14/10/08.

    Mel. x

    Infusion number 3. 15/10/08
    Unfortunately I had a relapse this month. It hasn't helped that I've been full of cold recently. I contacted my nurse and it was suggested that I have a course of IV steroids. I was slightly reluctant but it was explained that the Tysabri may not be able to work to it's full effect if I was lower than usual. The doctors examined me to ensure that I didn't have a chest infection- all clear. I had the treatment last week and noticed a significant difference straight away.

    I then returned to the hospital yesterday for my 3rd Tysabri infusion and everything went fine. No side effects- so fingers crossed everything is going to plan. It's amazing how many more people have started having the treatment in the last 3 months. Good luck to everyone!!!

    Next infusion 11/11/08.

    Mel. x

    Infusion number 4 - 11/11/08
    Well I am pleased to say that I am feeling much better this month- no coughs or colds- feeling pretty good in general. I seem to be moving around a lot easier and so many people have commented on the improvement. I'm still using my crutches when walking a bit of a distance, but where I can I try to have a go without. I don't know if it is the IV steroids that I had last month or the tysabri treatment, but whatever it is I'm happy.

    The actual infusion this month went without a hitch. I sat with my hands in hot water for a while to help find a vein. The first attempt did not work- leaving a lovely black bruise on the back of my hand. Second time lucky was in my wrist, and I must say I did not feel this at all. I think that his may be the way forward.

    Good luck to everyone!!!

    Next infusion 9/12/08.

    Mel. x

    Infusion number 5 and 6. 9/12/08 and 6/1/09

    Sorry it's taken me so long to write my entry- just realised that I didn't write December's either!

    Not a lot to report really- everything's going really well. I'm due to have my 6 monthly check soon, apparently my consultant is waiting until he has enough people for an extra surgery.

    I'm feeling pretty good in myself, moving around better than I have in a long time. Busy trying to organise a summer holiday which I don't think I would've done if I wasn't on the Tysabri. I feel like I'm getting my life back. 

    Good luck to everyone!!!

    Next infusion 3/2/09.

    Mel. x

    Infusion number 7 - 3/2/09

    Well at first I was worried that I wouldn't be able to get to the hospital due to the snow, but all was ok. It was like the bermuda triangle when I got there- NO SNOW AT ALL!!!

    It was quite a strange experience this month. Our usual doctor was off sick so we had to wait 2 hours to see another doctor- who didn't seem to know anything about Tysabri, or MS for that matter. Anyway I eventually started on the IV and everything went really smoothly, the nurse even got my cannula in 1st time which doesn't happen to me very often (I've probably jinxed myself now.)

    I'm feeling pretty good, really happy with the treatment. The only thing I have noticed is that I get quite tired the week before my infusion. But once I've had the infusion it perks me up straight away.

     Good luck to everyone!!!

    Next infusion 3/3/09.

    Mel. x

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