Saturday, 27 November 2010

Tysabri Number 19.......and it's very cold!

Hi everyone!
I guess I should say Good Morning, as it is 12.04AM!
I have had my Tysabri infusion today. It was number 19.
I find that very strange! 19 times, I have had a needle put in me. Actually, I have had far more attempts than 19. When I first started having the infusions I was having a regular cannula. My veins are a complete nightmare and the nurses would need several attempts to get the cannula in.
This became a real struggle for me. It wasn't just the fact
that they couldn't find the vein, it was when they put the needle in, it was SO painful for me.
I suffer very badly with pain. My skin is incredibly sensitive and I experience a lot of neuropathic pain.
It's one of the great anomalies of MS. You could have a dozen of us in one room and only a handful of us will actually suffer with pain.
I'm always amazed when I speak to other MS'ers who don't get any pain at all.

How can that happen??!!
I got to the stage where I needed something to change. I couldn't carry on having the infusions if I had to be canulated. It was causing so much stress for me. The infusions are every four we
eks and I would start worrying about it with two weeks to go. It's fair to say that I couldn't handle it!
One of the nurses asked me why I didn't have a portacath? I had no idea what a portacath was! It was explained to me that it is a port that is inserted under the skin. It is attached to a vein so that when the infusion is done, the nurse just has to put the needle into the port and the infusion is hooked up.
I followed this up and in September 2009 I had my portacath inserted above my right breast. Having the portacath has made a huge difference to
me and has allowed me to continue having the Tysabri treatment.
So here we are in November 2010 and I have had 19 infusions. I have to say that I believe that it is possibly helping
my MS.
I don't feel any different, I have all the same symptoms that I had when I started, which may sound strange, but I guess the positive thing is that I am not having many relapses.
The way I look at it is that it is keeping things under control. It may not be as much as I want but it is better
than nothing!!
I read an article about Tysabri to do with the longevity of it. It is the one thing that really bothers me.....other than the PML issue!
Because it is relatively new, no one knows what effects it will have long term.
The article I was reading suggested that if you have been on Tysabri for two years, it may be worth looking at taking a break from it for a little while, this would then possibly reduce the risks of getting PML. (PML is a rare brain infection that is known to be associated with Tysabr
Obviously if you take a break, then you are opening yourself up to having a relapse, but in my eyes, I would prefer a rela
pse to the risk of having PML.
I talked to my MS nurse about this, but she turned down the idea straight away. She told me that although my body is tolerating Tysabri at the moment, if I took a break, then there is no guarantee that my body would accept it again. And as there isn't anything else at the moment that I could transfer to, so they wouldn't want me to come off it.
I understand that! I did say about my concerns of the risks of getting PML, but she assures me that the risks are minimal and they monitor me closely for any signs.
I have to
trust that my consultant and the MS nurses have my best interests at heart. They are going to do what is best for me. And that is really important for me to remember. It is very easy, as the one who has to go through the treatment and has to deal with the illness, not to always look objectively at a situation.
So I had the infusion today and for some reason, whenever I have it, it knocks me out. I get really really tired and I know not to arrange anything for the next 24 hours or so.

I can almost feel it, once the infusion is up and running, I feel my eyes
getting heavy and my body deflates!
The nurse was saying to me today, that we don't know why it affects me the way it does. It's not something that happens to any of the others who have it. But then I have always been a little bit odd!!

So I always have to have someone with me because I know I can't drive myself home. It's one of the reasons that Martin became my carer!
We got in the car to come home and within about 15 minutes, I was fast asleep. I knew it would happen. It was as though a fog had come over me.
Once home, we had a cup of tea and then by 4pm I was in bed fast asleep! I woke up again about 11.15pm, in ne
ed of another cup of tea.
Hence the reason I am up and writing this post.
Of course it is The Ashes on in Australia at the moment, so I am able to watch a bit of the cricket too..........come on England!!

It is so cold at the moment. And as it is the start of winter, it's only going to get colder! That is a scary prospect!
It is something that does affect the MS pretty badly. But then extreme heat does too, so I can't win!

I hope everyone else is tucked up nice and warm and not suffering too badly. The one positive about this time of year is that it's CHRISTMAS TIME!!

Martin and I are big Christmas fans. We love this time of year and get very excited!! We have already planned our annual outing to go to the Birmingham Imax cinema to see The Polar Express in 3D! It is a wonderful film and it means a lot to us, to be able to see it in it's full glory at Christmas! Happy times!!

Take care everyone, keep warm and keep happy!

Love & hugs


  1. Ask your MS doc or nurse about getting the antibody test done. It would give you one more piece of information as to whether or not to stay on it.

  2. I just had my 46th treatment. I just took a test
    For the JC Virus. All MSers have the antibody as
    do 50% of the population. If the shunt is working
    for you, great. My nurse put the infusion needle
    in my vein only about 1/3rd of the way. The only
    improvement I have noticed is that my cognative
    issues have cleared up dramatically. My doc has
    also talked to me about a Tysabri vacation but
    from experience I know I will have a major relapse.
    (I took one dose before they pulled off the market
    and I crashed.)

    Good luck and if you ever want to talk, I'm here.

  3. Hi Amelia! Yay for #19. I had my 32nd infusion this past Monday. No signs of PML for me, and I have an MRI every six months to double check. Like you, I still have all of the same symptoms, but my MRI shows no new lesions in the 2-1/2 years I've been on Tysabri. My neuro, too, has said he doesn't want me to go on a break, BUT he's reading some research about *possibly* going every other month since I'm doing so well on it. But since they still need more info/research on taking it every other month and hoping it still offers protection, we're no doing that quite yet. (My Tysabri nurse told me about someone who was told to go on 6 month break, and just after one month had a severe relapse. Nothing helped her, so she had to be put back on T). My T nurse has also told me that she has several people that fall asleep after their infusions.

    In October, all the people taking Tysabri at my Neuro's office were asked to participate in a study to determine if having a specific antibody to the virus that causes PML gives that person a greater/lesser risk of contracting PML. I still haven't found out my results yet. It'll be interesting to see.