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

    Paula's Tysabri Diary

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    Paula, 37
     
    Diagnosed: Aug 2006
     
    Previous Medications: Copaxone: used for 9 months, difficult to say whether had any effect.
     
    Current Medications: Baclofen - 40 mg a day
     
    MS History: Have had about 7 relapses in the last 18 months, each time was left with something, never fully recovered from relapse.
     
    Main Problems: Balance problems, use a rollator to walk outside and furniture walk inside!  Eyes were very blurred now just jump.  Bad tremors that come and go, bladder problems that come and go also speech the same.  I lost my job and now don't drive very far, only kids to school and back (which is about 1 mile down road!)

    Update 19th December 2012
    I have now been selected to go on to tablets (fingolimod) and have been off Tysabri for the last 3 months (something I wasn't looking forward to) and then beginning of Jan I will have an MRI and a Lumbar Puncture to make sure that Tysabri is out of my system, then I can start the tablets.

    Tysabri Infusion no. 35 29th September 2010-10-06

    Nothing new to report.  Still on the straight and narrow really.  Decided that I probably won’t update this unless anything happens. 

    I have been driving more so have a bit more independence back still surprised at how little I can do but hey hoe, will get used to it.

    Regards

    Paula

    Infusion no. 28 – 17th February 2010

    Well everything went o.k. except I had the blood test last month for the PML virus and I am positive. 

    Apparently everyone carries this virus in it’s dormant form, but Tysabri can have an effect on it.  So I had two choices I could take and ‘drug holiday’ of a year or carry on with the treatment.  I chose the latter (obviously) I just have to be more vigilant about looking out for things.  Like cognitive and loss of co-ordination.  If any of those things happen then they will take me into hospital and flush the drug out of my system and I will have to come off it! 

    Apparently the risk when we start this drug is 1 in a 1000 and there are about 60,000 people on this drug, 40% are negative and 60% are positive so this takes the risk down to 1 in 600, but as my husband says given these figures the risk is still the same.  Also the risk is higher after having 24 infusions, for some reason, they don’t know as this drug is still new and there isn’t anything else around that you could take instead, the Professor said that there maybe an oral drug available next year but he didn’t know what the cost or criteria would be!!  Like everything else with this disease it’s a guessing game!.

    Apart from that everything is the same

    Paula

    Tysabri no. 27 – 20th January 2010

    Can’t believe that it’s been over two years that I have been on this treatment now.  Nothing special to report, still stable.  Had blood taken this time because there is a test to see if PML is active, apparently we all have PML in our system it just depends if it’s active or not.  If it is then I will have to take what’s called a drug holiday not sure for how long, then start the drug again.  The Professor told me that for the drug holiday they would give me steroids.

    My legs seemed to have stopped jumping at night, not sure if it’s the Tysabri or not. They are not so bad during the day as well.

    Next infusion on 19th February 2010.

    Paula

    Tysabri no. 24 Wed 28th Oct

    I’ve reached two years! But now got to wait for the antibody blood check that I had last year.  To check that I haven’t made any antibodies against Tysabri.  If I have I’m not sure what I do apart from not carrying on with Tysabri!!

    Apart from that been stable all this time, which has been good.  Not managed to put any weight on so back to the permanently cold phase!! But life is o.k.  Got a cold at the moment, whole family had it but as usual it has hit me worse!!

    Report back soon.

    Paula

    Infusion no. 20 - 8/7/09
    Can’t believe how quickly it has all gone.  Still stable. 

    Beginning to wonder if this drug has a ceiling on it, obviously no-one can say as no-one has been on it for long enough.  Makes you wonder though.

    Still struggling with weight, having got to 7 st, been going back to 6.12st recently so am getting real frustrated with it all.

    Am worried about this Swine Flu thing as have 3 kids, one at senior school who has got one pupil with it confirmed and the other two at junior school with a pupil off with it suspected.  Any suggestions greatly received at [email protected]

    Am enjoying the weather when/if warms up, at the moment am really cold again! Still next month going to south of France for holiday so should be warmer there!  Next infusion will be 5/8/09.

    Infusion no. 16. 18/3/09

    Not much to report except I am still stable.  I have also managed to put on a little weight and am now 7 st!  I know some of you will think so what, but seen as I had gone down to 6st 10 I am really pleased with this. 

    Also this week I made the decision to become an Avon Rep.  I am really looking forward to doing this as it will give me something to do and think about. 

    Will promise to update more regularly but expect (hoping) that I will stay stable! 

    Paula

    Infusion no.1 - 24th January 2008
    Infusion went well, when they could get me a bed.  Got to the ward and the bed they had saved for me, was taken by someone else!   So small delay then got on with the infusion.
     
    Felt fine after infusion.  About day 4/5 was very very tired.  About a week and a half after I noticed that my balance was fractionally better (I'm talking only a very small amount, but my husband noticed it).  Nothing else so far but balance is still fractionally better.  Next infusion is 21st February.

    Infusion no. 2 - 21st February 2008
    Well at first we couldn't find the MS nurse who deals with me.  After about an hour we found her! then the other nurse who puts in the cannula tried twice in the back of my right hand and couldn't so ended up putting it in my wrist!  After that things went fine.  Saw the Professor who again tried to explain that it was not meant to help with existing symptoms but to stop attacks from happening!  I agreed with him but explained that things have improved.
     
    My balance remains stable now (thank goodness).  I still walk with a rollator when I am on my own but really only for support, I don't sit down on it like I used to.  When I'm with my husband on the school run I use my stick and his arm (have even just held his hand as support, this is what the physio has told me to do).
     
    My energy levels have definitely got better.  I want to do more things now.  I've even started (not every day) doing things in the kitchen (cleaning, cooking).
     
    I’m going regularly to physio now in the hope that it will make a different now, there's something to work on.  The physio can't believe how much better my balance has got!
     
    Next transfusion due on 20/3/08 will update after.
     
    Paula

    Infusion no. 3 - 21st March 2008

    Well we knew that the nurse who puts in the canula was to be away and that a Junior Doc was to be called to do it, so was a bit nervous.  Used just my stick and my husband's arm to walk to ward this time.  The MS Nurse who deals with me was very impressed.  The Doc was called and it wasn't as bad as I had imagined.  Everything went smoothly as before.
     
    Things have remained stable and I think just small improvements now.  My temperature control seems to be sorting itself out, I am nearly always cold and have to put my fleece on during the day, but haven't had to do that for about 2 weeks, but now we have turned heating off so am having to get used to that.
     
    Energy levels remain higher, I have and wanted to do more things.  Have cooked tea several times now.  The other day we went round Ikea as a family (something I wouldn't have comtemplated a few months ago) and I purposely only used my stick and made my husband walk in front of me.  Managed it but was tired the next day.
     
    Now school has started again and have taken that leap and put my rollator away so am now walking across the playground with just my stick.  Got lots of comments yesterday (1st day of school) about how much better I was walking.  So next step is to do without stick!
     
    Well I have got infusion no. 4 on Wednesday and had my normal MS Nurse come round to take blood for liver test.  This will have to be done now before every infusion until  told otherwise.
     
    Am a bit tired at the moment but my infusions are coinciding with my period at the moment so I think that is taking it out of me!
     
    Will report back about next infusion, No. 4 on 16/04/08.

    Paula

    Infusion no. 4 - 16th April 2008
    Well not a good month.  Had the infusion on Wed which was no problem as usual.  But then at the weekend it was like someone had taken my plug out I had no energy, even to lift my head.  I felt a bit wobblier too.  I saw my Physio on the Mon, by which time was able to do a little bit more, but was still feeling washed out at any activity.  She felt that I wasn't too bad and that perhaps about 10% of my mobility had gone but it was still better than it was.
     
    I found all this very frustrating as it was nice feeling sort of normal again and now I didn't.  I could have a shower in the morning and wash my hair and then by the time I'd dried it I was ready for a lay down.
     
    Anyway this has continued throughout this month.  I went to see the Professor in London last week.  He was very pleased with my progress on Tysabri and didn't seem that bothered about this little set back.
     
    He has prescribed my Tizanidine for my jumpy legs as Baclofen didn't seem to have any effect.  It takes up to four weeks to increase the dose of this drug and although I have only been taking it for less that a week,  I feeling quite shaky and have not slept very well the past few nights, I mean hours of not being able to sleep!
     
    So altogether I am glad this month is over and hope that the next infusion can kick all this in to touch.
     
    Next infusion due on 14/05/08.
     
    Paula

    Infusion no. 5 - 14th May 2008
    Well, the nurse tried in the back of  both hands to fit the canula and ended up in crook of my right arm.  Hands hurt so going to have to do something about that for next time.
     
    Well only a few days after this infusion things seemed back on track. Fatigue wasn't brilliant, but I no longer had the absolute feeling of being worn out! and balance didn't feel as wobbly.  I saw my physio who agreed that things were back on track.  So the relapse wasn't too bad and only lasted a month.  Things were getting better.
     
    I think that the new drug I am taking for the spasms in my legs are beginning to work just a little.  I am now taking one in morning, two at lunchtime and two at bedtime.  My legs are now not waking me up at night and if I do wake up they are not jumping.  They are still jumping during the day so no change there yet.  I have to up the drugs by one tablet a week until I get to 24 mls ( at the moment am only taking 10 mls ), so a way to go yet!
     
    Anyway next infusion due 11/6/08 so will update after that.

    Paula

    Infusion no. 6 on 11th June 2008
    Wow! wearing my fleece, gloves and using a hand warmer works - the ms nurse found the vein first time.  No more hurting hands etc.  All well for the infusion, went well.  Spoke to the MS nurse about my jumpy legs and decided to stop the meds and just try upping the Baclofen.  Which seems to be working!.
     
    Not had any revelations this month, just keeping stable, which I know I should be glad of, but I want more.
     
    Next infusion is 09/07/08 so looking forward to that and will definitely use the hand warmer again.
     
    Paula

    Infusion no. 7 - 9th July 2008
    Every thing went well, the gloves and hand warmer certainly work, they found vein straight away.
     
    No change this month, just stable.  Still trying to sort out my jumpy legs the Professor came in to have a chat about them and prescribed me yet another drug (Clonazepam).  So I know take 3 Baclofen tablets at lunch, 3 Baclofen tablets and 1 Clonazepam at about 1800 and 2 Baclofen tablets at night.  It seems to work except I am quite tired during the day don't have any get and go (not that I had much before).  So going to talk to them about it again!  Beginning to wonder if it's worth it!
     
    Wish there was more to report but I guess I should be grateful of staying stable!
     
    Next infusion 7th August 2008 so will report then.

    Infusion no. 13 - 21/12/08
    Haven't updated for a while as nothing to report really.  I have still been stable, which I have now accepted that that's good and  not to expect anything better.
     
    The nurses that I see are brilliant, they still have trouble finding a vein to put the cannula in, but it doesn't seem to faze them.
     
    I am now under a dietician as my weight has fallen to 6st 10.  So hopefully things will look up now.
     
    I saw the Professor in December who was very pleased with my progress.  He said that I had more strength in my legs than before and that as long as it was working he saw no reason to stop.  So that was good.
     
    Anyway next infusion is on 21/1/09.  I will try to update more frequently. 
     
    Paula

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