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

    Nutty's Tysabri Diary

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    Age: 39 nearly 40 yikes

    Diagnosed: 1998 RRMS this changed to highly active aggressive RRMS

    Previous DMD’s: Rebif stopped due to neutralising antibodies
    Mitoxantrone ( 1 year course)
    Copaxone last injection 4th July 2012

    About Me

    Hi, my name is Karen but I usually go by the alias of Nutty on this website. I would list the medications I have tried and currently take but my prescription runs onto 2 pages!

    I have had most MS symptoms at some point along my journey but the most painful is the sensory disturbance of a constant burning feeling down the right side of my body.

     I have walking difficulties and use one of my many funky coloured sticks to assist me when I go out. I like my sticks to match my outfit or hair colour. (Crazy I know). I use my wheelchair if long distances are needed to be covered.

    I suffered from a major relapse in May and was admitted into hospital for 3 days IV steroids. Whilst I was in hospital my fabulous Consultant Neurologist Dr Gross took the opportunity to do a new MRI scan. This revealed enhancing lesions and yet more disease activity.

    He then asked his colleague Dr Malik to review my case and I was told that if I/we did not take radical action then it would be very likely that I could permanently be in a wheelchair within 9 months. I was advised to go away and research Tysabri, Autologous bone marrow transplant and Mesenchymal stem cell transplant.

    5th July 2012 - So Tysabri here I come

    I read up on all of the above mentioned options and was swaying to the ABMT but at my consultation with Dr Malik at Charing Cross we stratified all the risks and since I had not yet failed on one of the new disease escalation therapies Tysabri must be my first choice of treatment. My husband accompanied me to this appointment as he once was a turf account and could do all the necessary maths regarding all the different risks and benefit ratios.

    24th July 2012 – JC Virus testing

    Last time we travelled to hospital using public transport. A very simple journey of a train and a bus journey which was about 2 hours door to door with good connections. This time we took the car and parked in a side street near “Starbucks” which means I can treat myself to a coffee for the journey home every time I visit. (I figured there has to be at least one positive for going to hospital). The car wins by 30 minutes.

    Instead of going to the limb unit on the lower ground floor I went to the MS Day unit on the 4th floor. Wow what a difference to St Georges in Tooting. It is a lovely new unit yes it is a bit of a trek and the lifts are slow but it is worth it to be in a purpose built area with TV, radio, air-conditioning, magazines, books and lots to keep patients amused during their infusions. Everyone is really friendly and nothing is too much trouble.

    The hospital do all JCV antibody blood  tests on the same day and I had to turn up between 8am and 12 as the blood samples are all then sent off to Copenhagen for analysis.

    The unit was staffed by 2 MS Nurses and a registrar. There was less than a 5 minute wait and the staff took lots of time explaining the purpose of the blood test. Now time to sit back and wait....I hate waiting but my results won’t be ready for 2 to 3 weeks then it is a case of telephoning the unit and depending upon the outcome the next steps for this battle will be revealed.

    8th August 2012 – Results Day

    The scores are in and surprise surprise I tested JC positive. I had a long chat with the MS nurse and since I have already been treated with an immunosuppressant treatment of Mitoxantrone the risks of me going on to develop PML if I started Tysabri are very high and so it has been decided that I will not commence treatment with Tysabri.

    In a way I am relieved as I didn’t really want Tysabri but then it was a lower risk option compared to ABMT (Autologous bone marrow transplant).

    A big drink was called for so I went to the Olympics in my trusty wheelchair with my best mate and we got through several jugs of Mango Tequila.

    I have now been passed to yet another neurologist at Charring Cross and as an interim treatment they will perhaps look at trying me on Finglomod (Gilyenya). Which if I am accepted onto this is a much preferable option of only having to take one additional tablet a day with my current concoction of medication.

    So now I sit and wait again for the appointment date to arrive.

    I have no idea which classification my next diary entry will fall into so place your bets now and keep smiling.

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