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

    Karen's Tysabri Diary

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    My name is Karen, I’m 31 and live in the UK.  I have had MS symptoms since 2003 and was officially diagnosed in August 2006. 

    It all started when I was training for the Race for Life (a charity run) in 2003 and on one of my training runs my right leg started to drag and I had to stop, the next day at work my writing was terrible, so I booked in to see the Doctor thinking I’d maybe trapped a nerve (I know that probably sounds stupid).  After the Doctor examined me she advised me to go straight to hospital.  Basically at the hospital I was kept in for a few days ,they first told me I’d had a stroke, then they wasn’t sure so had a CT scan and MRI scan and I was sent home for the weekend.  On the Monday the specialist came and told me I possibly had MS. 

    I went 9 months with nothing then a relapse (right leg weak), then another 18 months passed and literally a couple of days before we were going on, what turned out to be a fabulous, holiday to Australia I relapsed (right leg again)!!  On these occasions I recovered well, but from autumn 2006 I’ve relapsed every few months and have not got back on track before something else happens. It’s mainly my mobility that’s affected although I had constant double vision for a few months last year and my right eye turned inwards, the eye is back to normal now thankfully. I’ve had a lot of steroids, IV don’t do much but oral generally help.  I have not worked since Jan 2007.  I get around in the house holding onto furniture and use crutches outside but can only walk a small distance and very slow since a major relapse in Nov 2007.  My first Tysabri infusion is on 13th May 2008.

    My Main Symptoms:
    - very weak right leg
    - stiff legs (mainly right)
    - urgency to urinate – a very annoying symptom
    - double vision – this has improved so only get it now if I get anxious!

    Other Symptoms:
    - lack of energy
    - left leg sometimes seems a bit weaker
    - cold right foot and redder than the left
    - feeling down and slightly depressed at times (what a surprise)

    Previous Medication:
    Avonex for 7 months – too many side effects that lasted for most of the week before I had to inject again.  It didn’t work anyway because I had a major relapse whilst on it so my neuro agreed to discontinue
    LDN tried whilst awaiting Tysabri – this made my legs go stiffer but no other side effects and it was easy to take.  I did not give it very long so it may be something to try again in the future if necessary

    Medication:

    - Calcichew
    - Baclofen (doesn’t do much)
    - Multivitamin, evening primrose oil, cod liver oil, magnesium
    - IV and oral steroids when required

    My hopes after future infusions:

    - Fewer relapses, less severe or none would be even better!
    - To regain some independence so I don’t have to reply on my partner/family so much (although they are all fantastic)
    - Ability to do the simple things that NORMAL people take for granted such as going shopping, even food shopping which normally irritates me, just getting out and about and driving
     
    Am I asking for too much?

    Tysabri Update July 2012

    It has been quite a long time since I last updated so sorry for this late entry.

    Personally a few good things have happened to me since my last update. Firstly my lovely partner and I married in June 2011 (we thought it was about time after 10 years together). We had a fantastic day. The sun was shining and we were surrounded by all our favourite people.

    My other fantastic news is that I am now a mum to an 11 week old healthy baby boy!

    We were intending to try for a baby after our wedding so I would have stopped Tysabri for 3 months before trying, however things happened a little sooner than we anticipated, so as soon as we discovered I was pregnant I stopped the Tysabri.

    My last Tysabri treatment was on 27th July 2011, and as our baby has been exposed to Tysabri the antenatal team carried out a bit of investigation, and it seems there haven’t been any major problems so far with Tysabri exposure. All my scans were normal and I had a routine pregnancy. I feel ok post pregnancy although very tired due to the lack of sleep…..

    I have resumed the Tysabri treatment even though I have tested positive for the JC virus!

    After discussing it with my husband we came to the conclusion that for now Tysabri is my best option. PML is obviously a worry, especially now I am a Mum, but my baby boy needs a Mum that can be as healthy as she can be for him, so for that reason Tysabri remains my best chance at keeping my MS stable. Also, as a post pregnancy relapse is more likely I feel I would be foolish to try another treatment that may not work for me as Tysabri has worked. We have decided to reassess this decision once I am past 6 months post pregnancy.

    I started a short course of low dose oral steroids the day after the birth just as a bit of insurance before I re-started the Tysabri (when my baby was 10 days old). I have now had 3 Tysabri infusions. My MS nurse came to see me after the third because I felt my left leg had stiffened and was not working quite as well as it usually does, so she gave me a 5 day course of oral steroids. I have now started with a cold (and my little boy also has his first cold) so was it a relapse or has the start of my cold affected me? Who knows, I possible think it was a relapse but it hasn’t been too severe.

    I think it will take a while to start to notice the Tysabri working as it did when I first started the treatment quite a few years ago. I don’t feel quite back to normal yet due to all that comes with having a natural birth, a probable relapse and all the energy needed caring for a baby. I am back in touch with the physiotherapist and she has given me exercises to work on and I know I’ll get myself back to where I need to be.

    Kaz x

    Tysabri Update 29/09/09
    Hi

    I thought I would write a quick update because it’s been a while!

    The treatment seems to be keeping me relapse free, so no new symptoms to report thankfully.  I have not had any progression or relapse since I started Tysabri 16 months ago so that’s fantastic! 

    The last few months I have stayed the same.  I think that although I’ve had improvements (since beginning the treatment) probably that’s it for me now, but you never know, anything is possible.  I am not complaining though and just hope I can continue to keep stable. I exercise every day and will continue to do everything in my control to keep me as healthy as possible. 

    Kaz x

    Tysabri Update 24/5/09

    Hi all

    I had my 14th infusion a few days ago.  A week after infusion 12 (and 10 days after I came back from my hols) I got shingles on my back.  It was quite painful at times but probably not as bad as everyone seemed to tell me it would be (inc. my GP who gave me anti-viral meds because of the MS)  My neuro seemed concerned and even came to see me at the medical day unit to OK my 13th infusion. 

    As shingles is viral he was taking no chances with the Tysabri and I am very pleased with the care I received.  He thought I had recovered well so the infusion went ahead and the only thing that remains now is some faint scarring on my back but it is fading thankfully.  My neuro thought I probably picked it up on my hols and nothing to do with the Tysabri treatment.

    Well I have now been on Tysabri for a year and I have got to say it seems to have gone by quickly.  I am feeling so much better and am keeping everything crossed that I can continue on this path. 

    Take care

    Karen x

    29th March 2009 - Tysabri No 10 & 11
    I have decided to update every few months now because I don’t have anything different to report.  The treatment is going well (fingers crossed).  I had my 12th infusion 24/03/09.

    Infusion No 10 (20/01/09) was fine and we went to Tenerife a few days after it.  I had no reactions and felt great on our holiday.  Infusion No 11 (17/02/09) was again straight forward. 

    We have just returned from a 2 week holiday in Cuba (we didn’t have a holiday last year so we are making up for lost time!!)  We had a great time again and I felt really good on holiday.  Yes the mid day sun does slow me down a bit but at the same time the heat makes me feel good.  I know I seem to be contradicting myself writing this but it is true.  My right foot in the UK sometimes turns really red/purple and is ice cold (my neuro has assured me its part of the MS and not to be too concerned about it), but in the sun it is back to normal and looks just the same as the left.  I also seem to loosen up on holiday and I feel like my legs are more responsive. 

    We were waiting in the queue at the airport for the return journey and a lady in front of us, who had been at the same hotel, asked me what was wrong with my leg, she explained she was a physiotherapist and thought it may have been MS, and told me that during our two week stay she thought my walking had improved!!  It took me a while to recover from the jet lag and I did get some numbness/tingling just before travelling home but as I am writing this diary entry I feel back to normal (well MS normal!)  My 12th infusion was a week late due to the holiday and I did mention the numbness/tingling to the nurse before my infusion.  My bloods and urine sample were normal and because I have experienced these sensations in the past the infusion went ahead.

    All in all I am happy with the way my treatment is going and hope I can continue to be relapse free for as long as possible.

    I’ll update again soon

    Kaz

    Infusion Day and first couple of days (13th May – 17th May)
    My Mum came with me to the day unit for my infusion because my partner hates needles (he can’t even look at them on TV and had to stay out of the room when I use to inject myself!!).  Infusion went well although I’d convinced myself I had a UTI and they wouldn’t administer the infusion but I hadn’t (I constantly wanted to wee because I’d drank so much cranberry juice and water).  No reactions during the infusion or the 1 hour observation afterwards so we went home.  I had a sore throat by the evening but nothing else.

    The next day I felt so tired, complete fatigue most of the day and the day after but this is getting better. By Friday I had numb legs but I’ve had this before so no new symptom, also I am finishing a course of oral steroids so might be a bit of a downer from that. Woke up Sat morning (17th) and had a slight rash on my chest.  So nothing major, I’m fine with it.

    I’ll update before my next infusion if there is anything to report.

    Karen

    4 weeks after 1st Infusion (2nd Infusion on 10/06/08)

    I monitored any changes over the 1st four weeks and can’t say I noticed much, although possibly small changes for the better. A few people have commented that I’m looking well (although sometimes I don’t feel it!).

    Possible improvements:
    - Urgency to urinate seems better at times but not always. 
    - My right foot pointed outwards when walking but seems to be a bit straighter now but again not always.
    After the infusion I had fatigue for about a week (it gradually eased as the week went on), and then for the next few weeks I felt quite good and very alert until a few days before my 2nd infusion when I felt tired again.

    The 2nd infusion was very straight forward and I haven’t had the tiredness or a rash this time but my legs both feel very heavy at the moment (one week on).  I did notice some spots in my hair line (strange place to get them I think) maybe this was down to eating too much chocolate.  If I’m honest I must say I’m a little disappointed that I haven’t noticed more improvements but I am aware there is a long way to go yet.  On the positive I feel good in myself and am hopeful.

    Karen

    4 weeks after 2nd infusion (3rd infusion 8/7/08)
    Well thought I’d write a bit earlier than last time, mainly because I forget things I’ve noticed if I leave it too long!

    The first few weeks were ok really, I didn’t feel much was happening but looking back gradually there has been some improvement as the weeks have passed:
    - I have tried to walk with one crutch rather than two around the house and this has been successful at times
    - I managed to walk 5 or 6 steps without holding onto anything a few times
    - My balance is showing improvement
    - I occasionally had double vision but this seems to have stopped and I don’t think I have had any DV since starting treatment
    These small improvements are encouraging but I’d like improvements fast (I am so impatient!).

    I changed from Baclofen to Tizanidine a couple of weeks ago and am slowly building up the dose. I only take it at night because this is when my leg is really stiff/spasms and it does seem to be helping.

    I’m getting a medimotion bike delivered on 10th July and am looking forward to trying it.  I want to concentrate on building up my legs and have been doing lots of exercises. The bike is quite expensive so it is on trial for 3 months to see if it helps – it is worth a try.

    There have been no new symptoms at present and hopefully this will continue.  In a strange sort of way I’m looking forward to my next Tysabri dose.

    Karen

    4 weeks after 3rd infusion (4th infusion 5/8/08)

    The 3rd infusion went ok.  It was very straightforward and I felt quite chilled out.  I’m sure I will be a bit more cautious on the 4th infusion because of what happened to one of the other Tysabri diarists on her 3rd infusion as I’m sure everyone has read.  I naively presumed if a reaction was going to happen it would be on the 1st infusion not the 3rd!  I hope any future treatment is successful for Diane.  Also, the recent news that there have been two new cases of PML is slightly unnerving but I suppose most prescription drugs on the market have risks!!

    My right leg was not very co-operative for the first few weeks after the infusion and I am tending to find it is in the last 2 weeks after treatment when I see improvements.  The medimotion bike is good and my legs feel a bit stronger already.  My walking and balance are improving slowly but as I’ve said before I wish the improvements were faster.  I have loads more energy so its frustrating not being able to use it!

    My right leg stiffness/spasms are improving so I seem to have found the right amount to take of my Tizanidine tablets (4mg at night) and the bike is supposed to help with that too so maybe in combination they are working.  Also, my right foot is not as red and it looks much more like my normal left foot.  I feel much better for exercising because I’m doing something for myself with the help of Tysabri.

    An extension has been approved for our house so I can have a downstairs toilet which will make life a lot easier for me.  My partner says it’s the most expensive toilet he will ever have to buy!! The building work should start in September so not long now. 

    Anyway I’ve rattled on enough…..

    Karen

    4 weeks after 4th infusion (5th infusion 2/9/08)

    It has been a quiet month so not much to report.

    4th infusion went ok.  I didn’t get any side effects at all so that’s good.  My right leg is feeling stronger, and when I stand now it does not feel as if it will give way.  I think exercise has probably helped more than the Tysabri but I’m no expert (I go on my medimotion bike everyday morning and evening). 

    I ran out of my Tizanidine tablets and didn’t take them for about a week (my fault because I put my repeat prescription in too late to get it back before the bank holiday weekend).  I was ok without them which surprised me.  I am hoping with continued exercise my stiff legs will ease enough so I won’t need muscle relaxant tablets at all.

    I am happy with the way my treatment is going and I continue to be relapse free (I hope I’ve not jinxed myself!!)
     
    Kaz x

    4 weeks after 5th infusion (6th infusion 30/9/08)

    My 5th infusion was straight forward again.  No side effects to report from the Tysabri so I’m pleased with that.  NO RELAPSES!!!

    The weeks seem to go by so quick now.  I’m finding small improvements such as being able to walk up the stairs normally rather than one step at a time with each foot so that’s encouraging for me (I’m still very slow though).  My exercise plan seems to be working because my right leg seems to be more co-operative.  My physio has also given me a lot of balancing exercises because I’m quite wobbly, but I only started them a few weeks ago so fingers crossed they’ll help.  I’m trying to walk with one crutch rather than two as much as I can or walking with someone and no aid.  I am managing to walk in the house on my own more than I could last month.  I think its all about rehabilitation now.

    I had an appointment last week with the neurologist (a locum one!!) he was pleasant enough but seemed surprised that I had noticed improvements whilst on the Tysabri – he asked me how often I have the infusions, so the fact he didn’t seem to know this info didn’t fill me with confidence.  Hopefully I’ll see someone else next time.

    Kaz x

    4 weeks after 6th infusion (7th infusion 28/10/08)

    Hi all

    The infusion was straight forward again and it has been another good month.   

    I’m walking about in the house much more on my own and getting up the stairs quicker.  I haven’t been using two crutches in the house, just one when I need to.  I’m not as confident outside so have been using both crutches but I want that to change.  I am hoping with more practice and confidence I will eventually walk without any aids

    My energy levels are good but I’m not sure how they would be if I was putting in a full days work, although I do hope to get back to work in the future because I miss my job (never thought I’d say that).  Looking back at how I was when I started the treatment there have been improvements, and I know there is a way to go but I can honestly say I am starting to feel like me again.  I hope this can continue.

    Kaz x

    4 weeks after 7th infusion (8th infusion 25/11/08)

    After my 7th infusion I didn’t feel good.  My right leg was not co-operative and it felt weaker, typical – as soon as I start to feel a bit better something goes wrong!!  I felt quite down about it then I started with a cold, and as soon as the cold went my right leg showed its previous improvements, and in the last few weeks I have further improved.  No relapse then I think, just the cold affecting me (It must be at least a year since I last had a cold).

    I have not used my crutches for the last week at all.  I’m walking independently at home, but I’m still reliant on someone’s arm/hand outside although I feel a lot steadier.  My balancing exercises are paying off.

    My energy levels are good but I still lack confidence outside so I need to do something about that.

    Take care

    Kaz x

    4 weeks after 8th infusion (9th infusion 23/12/08)

    Hi all

    No relapse to report! My 8th infusion was straight forward again thankfully, other than waiting a lot longer in the day unit due to a problem with the new appointment system.

    I have been out more recently (Christmas meals etc) with a little help from my family and friends, and although I am grateful for the help I get, my aim is to get out and about on my own in 2009!  Independence is a big thing for me and I am slowly getting there. 

    My right leg is moving easier as the weeks go by and although it is no where near normal it is gradually improving after each infusion it seems.  I do wonder how far the improvements can go but I’m hoping they continue well into 2009.

    I can do a lot more now than I could 7 months ago as I’ve already written in previous updates and I hope in 2009 the treatment continues to keep me relapse free.

    Merry Christmas and I hope everyone reading this has a happy and healthy 2009.

    Kaz

    4 weeks after 9th infusion (10th infusion 20/1/09)

    Hi everyone

    My 9th infusion was fine – the nurses were fantastic as usual. I seem to be writing the same thing each month now i.e. that I’m doing well I think, I have an appointment to see my neuro in March so I will see if he agrees.

    My M.S. seems to be stable (hopefully!?) and I feel really well.  The more I seem to be able to do, the more I forget what I couldn’t do previously because it is now done with more ease.  I still cannot walk far but its better than it was this time last year.  I am thankful and appreciate what I can do though and don’t take anything for granted.

    I continue to exercise and eat well.  I changed to a non-gluten diet a few months ago and do feel better for it.  It is my personal choice and nobody had advised me to alter my diet.  I have an interest in nutrition and have done a lot of reading up on the subject so I decided to give it a go.

    We are off to Tenerife for a bit of sunshine and chill out time next week so looking forward to that.

    Karen x

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