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

    Deborah Penny's Tysabri Diary

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    Deborah Penny

    My name is Deborah Penny, I am 36 years old and live in Oldham (in Gtr Manchester) England.  I am married to David and have a daughter who is nearly 5 (as well as a dog, a rabbit and 7 chickens).  I am a primary school teacher.

    Current medication:  Pregabalin,  Modafinil,  Lactulose, Tysabri
    I am needing to use crutches or walking stick for balance more and more.

    My first symptoms began in Feb 2006.  I had numbness in both of my feet (couldn’t feel a thing), over the course of 2 weeks this numbness spread up both legs.  The numbness was also accompanied with pins and needles or (if I’d been walking) electric shock feelings.  I eventually went to the doctors, after a period of self denial and making excuses to myself as to why I was feeling the way I was (maybe it was due to walking around the house with just socks on, especially on the laminate flooring).  The doc said they would refer me to the hospital, so off I went back to work.  Later that day I had a call to say that I needed to get to hospital and be prepared to stay at least overnight.  Obviously that made me panic – they wanted me in for observations as a consultant had seen my notes and was concerned I had something called Guillain-Barré syndrome which could cause problems with my internal organs, and if left untreated would be fatal! As it turned out, it wasn’t that.  I ended up staying in for nearly a week having loads of tests which ruled out loads of bizarre things like lead poisoning.  I was sent home without a clue of what was wrong with me but told to wait for an MRI appointment.

    MRI came and went, it turns out that for some reason they had done a spinal one looking for back problems – I even got sent to the ‘back’ consultant.  He said that he thought it wasn’t his domain and referred me to neurology.  Another long wait for yet another appointment, after the usual tests (scratch test, balance, that finger to nose and neuro’s finger one) I was referred for another MRI and further investigations.

    Eventually, in October 2006, after my second MRI (the correct type this time) I was given the diagnosis I had already come to in my own mind. I had lesions on the brain which, added with other tests and symptoms, meant I had MS – RRMS.  It felt like it had taken a long time to get to this point but I now realise that I am one of the fortunate ones – it had only taken 8 months from my first symptoms. I was given an MS nurse who came out to see me the same week  - and must say that I couldn’t have got through stuff without her (and again I know how fortunate I am as some of you out there don’t have access to such a service).

    In the January of 2007 I was prescribed Rebif.

    Since diagnosis I have had quite a few relapses, and had 3 lots of steroids to deal with the more debilitating ones – had 2 episodes of Optic Neuritis, increased pins and needles/numbness in hands and arms and more recently have ‘lost’ the left side of my body (although all that remains of that is what I think might be drop foot – left leg seems to drag and foot only works correctly if I really concentrate on it).  Fatigue is playing a part in my day to day life now, I am currently taking Modafinil for this.  I am also taking Pregabalin for the pins and needles.

    I saw the consultant in October and he suggested changing Rebif as it was obvious that it wasn’t working.  Tysabri was one of the suggestions but I needed another MRI to see if it was going to be part of the equation.  The report following the MRI was quite scary, it stated that I had “a significant increase in the number of lesions on the brain”. I was told that it looked like I had an aggressive form of RRMS and as such was a prime candidate for Tysabri.

    I must say that the thought of PML made me quite cautious but after lots of discussion with David and some friends I decided that the risk (all be it a major one) was far outweighed by the benefits of me being able to enjoy family life and hopefully go back to work without having to have time off again.

    So, there you have it – decision made.  All I had to do was wait for the appointment…….

    5th – 9th Infusions!

    (Haven’t written for a while – sorry!)

    Managed to make it to Disney World – and had a fab time.  I was persuaded to get a scooter and must admit it was the best decision.  I had never used one before but it really did make a difference as I knew I could keep up the pace without tiring myself out.  The staff were amazing – made me and my party feel like royalty!!

    I was struggling near the end of the holiday though, which showed me that I was ready for my next infusion –I was a week behind with it.

    As far as the infusions go I am not doing too bad.  I have begun to get UTI’s just after each infusion – apparently this is not due directly to the infusion though.  The doctor thinks that if I am retaining in my bladder and I have had the Tysabri, the increased level of poor immune system will tip my body over the edge and as it can’t cope, I will end up with a UTI. I have had antibiotics for it but am trying to deal with it without more medication.  I have an appointment with my continence nurse this week to do bladder scans and discuss the possible need for ISC (independent self catheterisation).

    Recently I have also been having bizarre pulse rates the hour after the infusion.  When the nurses do the obs straight after everything is fine but after the last 3 infusions, when they come to repeat the obs an hour later, my pulse has shot up.  On one occasion it went to 117.  The last time, I ended up having an urgent ECG, which came back fine.  The doctors say it isn’t a known side effect and as such are going to monitor me next time – and might even try putting the infusion in at a slower rate.

    Despite all of this, I still am glad I am on the Tysabri and feel that it is helping to increase my energy levels and improve my walking and balance.  I know that for a few days after the infusion I need to take things easy, but then for the next 2 or 3 weeks I have more energy and my walking improves.  Don’t get me wrong, I’m not ready to climb mountains, or run marathons BUT I now have enough energy to walk to school to collect my daughter and to even empty the dishwasher and re-fill it without the need to sit down for a rest in between.  Which, in my world makes Tysabri a resounding success!! 

    4th Infusion (4th June)

    I am a week behind this month due to a stomach bug – obviously I wasn’t allowed to go for infusion until I was better.

    Things have been going OK, I still feel tired for about 48 hours after. I have also noticed that I have a sudden bout of tiredness as the infusion is going in – its as if it is sending me to sleep.  I now make sure that I have someone with me to ensure I do not have to drive myself home afterwards.

    Another possible side effect I have been getting (which I shall check to see if the same thing happens next time) is that I get extremely cold for about 48 hours too.  Neither of these side effects concern me though, as when I was on Rebif I would get the ‘flu like’ symptoms after each injection, so I am used to feeling this way!

    My walking is getting stronger and a few days before this infusion I had my orthotics appointment and have been provided with an ankle foot orthosis (AFO).  I have another appointment in a month at which I will have a made to measure one provided if I have managed with this one.  At first it felt odd as it made my leg move correctly and not swing out from the hip but I think I have got used to it now.  It didn’t make any difference to my walking speed at the hospital, just to the leg position.

    People are still noticing a change in my walking which starts about a week after the infusion and lasts for nearly 2 weeks.  Hopefully this will continue and I will become more able to manage without my crutches or indeed my stick for short distances.

    At the end of July I am going to Walt Disney World – so that will be a great test of my walking and balance!!  I have been told about the electric scooters that I will be able to hire, so I am not overly concerned about my walking there.  I have one more infusion to go before I fly out – I am not able to have an early one as the infusions have to be at LEAST 4 weeks apart.  I will be in America then at the end of the 5th infusion cycle and will be about 2 weeks late when I get back.

    3rd Infusion (29th April)

    This time things went a lot more smoothly.  Journey was fine and got to the ward with 5 mins to spare!  No problems with taking blood or getting cannula in.  Got there at 10, had peg test and the timed walk, saw consultant at 11.30 infusion started at 12 and I was leaving the ward by 2.20. 

    Got talking to another patient while I was there (the good thing about where I go is that you see the same people).  He told me that the first time he went he was in a wheelchair and after 16 infusions his walking is better than mine – he also said that the first ‘peg test’ he did took over 3 minutes and now its less than 20 seconds.  He has given me increased hope that Tysabri is the right treatment for me!

    When I got home I noticed that my pins and needles were getting worse and that I was feeling very tired (this hadn’t happened before), as the night went on the pins and needles got worse and I must admit I had trouble sleeping.  The day after I was so tired but couldn’t rest due to the pins and needles, as the day progressed so did the pins and needles (thankfully!) I managed to go out to choir practice for an hour in the evening but slept like a log when I got home.

    Today (2 days after) I feel like things are getting back to ‘normal’ and am hoping that the reaction I am having at the moment will subside over time, as happened with Rebif

    Bladder issue not got any worse. Got an appointment for orthotics on 1st June, so hopefully I can start dealing with my walking in readiness for the Tysabri to have me running marathons!!

    2nd Infusion (1st April)
    I knew it was going to be a bad day!!  To start with I got stuck on the motorway on the way to hospital so was over an hour late.  Then I waited an age before anyone came near me to do any obs.  Eventually the consultant came just as the food was being served only to be told that the blood taken last time had coagulated so they couldn’t use it.  So…… I had to wait for new blood to be taken and for the results to come back before they would let me have the infusion.  Then when the nurse came to take the blood and after 3 attempts, I nearly fainted and ended up being shot back in my chair by the nurse to stop me falling on the floor!! Anyway, everything was OK and I was started about 4 hours after I had arrived.

    The day after I was fine – in fact I went out shopping, I had no signs of any tiredness.  A few days afterwards though, it hit me!  I was a complete mess, tired and irritable (a point easily backed up by hubby and close friends!!)  I felt like I do after I have been on a course of steroids.

    Just under a week later though, I felt fine and people even commented on how my walking seemed better and that I even ‘looked a bit better’.  I am hoping that this period of feeling rotten after the infusion will, in time get shorter and the period in-between, when I feel better than my ‘normal’ will increase.

    One thing to note is that my bladder seems to be playing tricks on me – instead of hardly ever going, I am finding myself with an increased urgency (I will keep my eye on this).  My walking seems to be slightly better but am still dragging my left foot.  Physio have referred me to orthotics for an assessment as she thinks it might need some sort of device to help correct it.

    First Infusion (4th March 2009)

    Got to hospital at 10.30 and was taken into a ward with other people on Tysabri. It took nearly 2 hours for a doc to see me and discuss everything he needed to before the first infusion.  He asked me 3 times if I was happy to go ahead with it – in the end I said that if he didn’t hurry up then I might change my mind!!

    Had to have blood tests, but didn’t have to wait for results as the hospital (Hope, in Manchester) are now doing them retrospectively, so next time I go they will have this times results.

    Also, I had to do 2 timed tests.  The first is a 25 metre walk (which I have done loads of times before). The second was a new one for me - I had to put 9 pegs in holes and then take them out, repeated with my other hand.  That made me realise how much my left side is now behind my right hand side, it took a lot more concentration to pick up and locate the holes with my left hand.

    After a spot of lunch the time finally came.  The infusion took just under and hour, but then had to stay behind for another hour while they kept their eye on me and continue to monitor blood pressure and temperature.  Another consultant came to see me to see how I was and if I had any questions, especially about PML symptoms.  After a discussion about what to do and where to go if I feel I have any symptoms of either PML or just ‘normal’ side effects, I was ready to leave.

    The next day I was very tired (an effect it has on most people I have spoken to) but apart from that haven’t felt any different.  I have been told by the consultant on the ward that it might take 2 or 3 infusions before I start to develop side effects, so we shall see what happens next.  Second infusion is on 1st April (April Fool’s day – good or bad?!?!?!?!)

    I’m still off work (since Dec last year) but occupational health at work have advised me to stay off until I have had at least 2 infusions and we can see how I am reacting to it.  The way I feel at the moment, I don’t think I’d be able to cope with the job – fatigue, poor balance, drop foot to name a few  problems I need to sort out before I go back.  Hopefully  the Tysabri will kick in soon and I can try to get back to ‘normal’

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