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

    Kate's Tysabri Diary

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    Name - Kate
     
    Age - 36
     
    Diagnosis - 2005
     
    First relapse - 1994
     
    Current medication- Tysabri, Baclofen 75mg, Oxybutinin 7.5 mg at night, Nitrofurantion 50mg at night.
     
    Previous medication - Betaferon
     
    Factors which accerbate my MS  - stress (this affects me a lot), lack of sleep, general fatigue, illness, heat, cold.
     
    Main MS Symptoms- Foot drop and weak hip flexors, spasms on waking, weak left hand
     
    MS History - I was diagnosed with MS after suffering from knee pain and strange spasms in right thigh for three years previously. I have major problems with my patella in both knees (not MS related) which meant that I was sent to orthopaedic surgeons and a rheumatologist before the latter finally sent me for an MRI scan. I am able to walk effectively in the evening with crutches when my legs feel easier, stronger and my feet are able to clear the floor. This baffles my doctor and physio. I believe it is stress related as I can never walk well under scrutiny or on demand.

    On diagnosis other instances fell into place (double vision in 1994 which lasted a couple of months and numbness in my hands in 1995) and having requested access to my doctor's notes I discovered that the neurologist I was referred to at that time suspected demyelination but neither told me nor carried out further tests!!
     
    Since diagnosis I have dislocated both knees on separate occasions which has weakened my muscles and now walk with two crutches and use a wheelchair on bad days and when out.
     
    I started Tysabri in December 08 and am due my third infusion at the start of February.
     
    After the first infusion I had a bad couple of weeks but I cannot say this is because of Tysabri as there were so many factors which could have made me feel poorly: stress of Xmas, sickness bug (which affected most people this year) and even the stress of starting Tysabri.
     
    The second infusion went ok although the sickness bug had not completely cleared and the whole event of travelling to the hospital in rush hour and the anticipation of the usual problems; finding my vein left me drained for days after.
     
    I will update after my third infusion.

    Update January 2010

    HAPPY NEW YEAR TO EVERYONE!
     
    Well since a lovely holiday in SW France I haven't updated since September as a lot has been happening which has made my MS worse;two funerals (stressful), two toe infections (since starting Tysabri Ive had four!) and a bladder infection. The infections meant four lots of antibiotics Oct-Dec so I can honestly say Ive felt lousy. I find, while helpful, my GP has to be guided as to how things affect my MS which can leave me feeling a little helpless. Ive also now got neck pain (posture issues I guess).
     
    My joints remain sore and the latest infection (bladder) has led to more spasms.
     
    I missed my infusion in January (number 14th) as the nurse felt it better to miss when I have an infection.
     
    I received the good news that I do not have arthritis after investigations so wait to see my neurologist for further discussion. Im sure another MRI is also due!
     
    Well Ill leave it there, sorry not to be more positive and will update soon,

    Kate

    August infusion 9
    Had a worse month this month. Felt tired and vague a lot of the time something which had improved since starting Tysabri. My acid/reflux has been bad and I've had a few upset stomachs. My doctor changed my Omeprazole to pantoprezole which simply upset my stomach more so I've changed back to Omeprazole.
     
    What has been a real positive change this month is getting my own personal trainer. She is a national kick boxing champion which may sound a little ambitious but she is able to overlook my MS while taking my low fitness levels into account. She also gives me a more positive outlook as I feel as though I am doing something positive to help my situation. She is not just focused on core stability which most neurophysios are and she is aiming to strengthen my upper body and legs. Lets hope this can be done so long after my last knee dislocation.

    July infusion 8
    Had a varied month with joint and muscle stiffness being my main problems. As my neurologist suspects arthritis I went to see my rheumatologist who sent me for an Isotope scan to investigate the joint pains and an ultrasound  scan on the lump on the back of my hand. The lump is tendon swelling while the isotope scan reflected arthritic activity but as my blood tests were negative and because I am on a new still largely unknown drug (Tysabri) my rheumatologist will not put a specific name to the  type of arthritis evident in my knees and wrists. I am now waiting to see what both she and my neurologist decide on regarding my care going forward.
     
    I still believe that the Tysabri is responsible for my joint pain as this has become more evident since starting the treatment. In the Tysbari pamphlet we are given joint pain is cited as a side effect.
     
    On a positive note at the end of the month I had an episode when I walked around on crutches and went to the bathroom without my chair which I have not done for a long time.
     
    My neurologist also suggested finding a fitness trainer to help 'get me back on my pins' after using my wheelchair since my second knee dislocation in Jan 08. Having had no success with my NHS neuro physio this could prove difficult to do.

    June Infusion 7
    Had steroids as planned and for a couple of days after my joint pains disappeared and my walking improved only for the stiffness to then return. As after my last steroids I suffered bad stomach acid so I increased my strength of daily omeprazole.
     
    Felt well in myself but the very hot spell during Wimbledon played havoc with my ankles (v. swollen) and my joints and lump on the back of my hand were very sore.
     
    Great news regarding my 6 month MRI. There are no new lesions on either my brain or spine in fact there is evidence of lesion reduction on my brain.!!

    Infusion 5 and 6
    After infusion five I had a fairly good month with only one poor week when I was immensely tired. I finished another course of antibiotics for the suspected UTI but my joint pains in my hands are still a problem and a lump appeared on the back of my left hand. Having shown the MS nurse and the nurse who inserted the cannula for infusion 6 no one seemed to know what it is although it could have come from the cannula the previous month. My hand really hurts when I put weight through it which is a problem when I rely so much on my hands so I am seeing my GP and will show my neuro when I go for my 7th infusion.
     
    This last month since my 6th infusion has been very good. My fatigue seems to have waned and even going on holiday for two weeks did not exhaust me.

    My parents commented on how much more energy I had than usual. I think it is always useful to get the opinions of people who see you less frequently and so who can judge your progress. I did have a throat infection on my return but that cleared pretty quickly.
     
    I will update after infusion 7 when I will have had another MRI as required after 6 infusions and when I hope to have had a course of steroids.

    March 2009 - Infusion 4
    This month has been somewhat mixed. Again I was very tired the week after the infusion and my joints and arm/chest ached. The month has been dotted with great days when I had lots of energy which allows me to exercise, walk, feel positive (and go to a n Elbow concert at Wembley) but also really bad days. I spent 4 days sleeping pretty much constantly and suspected a UTI as had symptoms but tests came back negative. My neurologist said tests can come back negative owing to people taking a daily low dose of antibiotic but my doctors seem confused by that! I also had a 24 hour headache which concerned me enough to phone my MS nurse.
     
    At the time of writing this I had infusion 5 last week but will write my diary at the end of the month. Im still exhausted which is making my symptoms more marked but am about to start more antibiotics for my undiagnosed UTI!!

    February 2009. Infusion 3 (1st Update)
    I had infusion three at the start of February. As usual the journey there caused stress owing to traffic following snow and general bad weather and once at the hospital we were all moved (some mid infusion) owing to the hosplital needing to use the Tysabri designated room for other patients.
     
    As usual my veins did not want to offer any blood for the usual tests so in total I was at the hospital for five hours.
     
    The infusion itself went fine.
     
    Between infusion two and three I had developed joint pain in my hands and feet and my left heel feels sore and almost throbs intermittently. I informed my Doctor who asked for a full rheumatoid blood test which have come back negative. Another girl in my Tysabri group also suffered from hip pain at the start of her treatment but it then went away.
     
    The week after infusion three again left me exhausted which accerbated my morning spasm/strange feet sensations (almost like mini spasms affecting my toes!) and heel ache. Of course I worry about PML when I feel like this (the new reports of further cases do not help) and I am waiting to see my Doctor about perhaps starting Pregabalin or Gabapentin to help the feet sensations. I am now also on 4mg of Tizanadine at night which may be improving my sleep and morning sensations anyway so perhaps pregabalin can be put on hold.
     
    It is now two and a half weeks since the infusion and I can report that I managed to get up the stairs twice without full  assistance to both feet and I managed to get out to the car on crutches rather than with my chair. I usually rely on the chair when out owing to stiff, uncooperative legs only being able to walk at night! No one is too sure why the evenings suddenly allow me to walk and effectively clear the floor with my feet but thats how things are for me.
     
    Can I be improving thanks to Tysabri?.............fingers crossed and Ill update after my next infusion.

    Kate

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