When I was diagnosed with MS back in 1998 it was immediately suggested that I go on an immunotherapy drug.  At the time there was only one drug on the market Beta Interferon, which was adminstered by self injection.  It was a very small needle and a subcutaneous injection, which meant that it just went in through the top of the skin and not into the muscle.  Not very fond of needles I learnt how to do this but this drug really didn’t suit me as it caused ulcers at the injection sites.  But until something else came on the market it was here to stay.

Now 1998 isn’t that long ago, 15 years in fact, but in those 15 years there have been great strides in research into MS.  We still needlesdon’t know the cause or have a cure but we do have a number of drugs on the market that have been proven to slow the progression of MS.  I eventually came off the Beta Interferon and tried all 3 of the other injectable drugs that came on the market.  I second one I tried was Avonex which was an intermuscular injection, now this was hard!  I’m not usually that squimish but when someone hands you a needle that is about 5cm long and suggests that you throw it into your thigh muscle like a dart nice and straight, I become a little bit of a baby!  Needless to say I did learn how to do this but had a number of relapses on this drug, so moved on to the next one Rebif.  I was on this drug for about 8 years, back to the subcutaneous injection, but eventually we worked out that the headache I had for 8 years was related to this drug!  So the last one that I could use was Copaxone which I did up until  2010.

In 2010 there was a new pill form of drug on the market Movetro (also known as Cladribine) and it was amazing!  No more needles and only 7 pills over 5 days, wait a month, have some blood tests and then 7 more pills over 5 days then nothing for a year.  This was my kind of drug!  It was a chemo agent that had been used for years with some blood cancers.  For me it worked amazingly.  Unfortunately because it was only approved for use here (Australia)  and some countries in Europe but not the USA the company decided to stop supplying it.  Yes it all came down to money, the USA wanted more testing done which would have cost the company millions.  It didnt’ matter to them that there were a lot of people being treated with the drug and that it was working, they didn’t have the US market so weren’t making money.  I don’t know about you but somehow this seems so wrong!  At first the company stated that they would provide the second year of treatment (it was a two year course) and then at the last minute decided against that.  So the big question for me was “What to do now?”  This was in January 2012 and the last thing I wanted to do was start a new drug with possible side effects when I had Nationals, World Cups and Paralympics on the cards.  So I opted to take nothing.  My neuro had suggested that the Movectro would most likely stay in my system for at least 6 months anyhow.  And so it was for the first time since my diagnosis I wasn’t taking any type of immunotherapy drug.

After returning home from London I noticed little symptoms creeping back into my life.  Those little things that no one sees but that your body can definitely feel.  Pins and needles that I have had in my feet since about 2006 started to spread from the bottom of my feet up my legs, the burning sensation on the bottom of my feet getting worse, my bladder all over the place doing its own thing and pins and needles creeping into my torso.  Nothing major but very annoying!  So after a consultation with my neurologist we decided that I would try a pill form that has been on the market for a few years called Gilenya (Fingolomid).

So yesterday was the day!  The first dose has to be given to you in hospital so that they can then monitor you for 6 hours.  This drug has a habit of dropping your heart rate (HR) and blood pressure (BP) and they say that if your heart rate drops more than 20% below your base line rate then you basically are not allowed to go home!  I had to chuckle to myself when the neuro told me this because my resting HR is 46 so much lower than that and well…I’m not sure it can get that much lower!  So here I was in St. Vincent’s Medihotel for my first dose and my HR comes in at 47.  The nurse kind of looks at me weird and says “So are you like fit or something?”  I replied “well I was just about to say that it was a bit high!”, joking of course!  But told her that yes I was fit.  They worked out that they didn’t want my heart rate under 38, so that was my goal…stay above 38.  Each hour they came in and took my HR and BP.  First one was 42 (I got up and did some squats), second one was 40 (got up and walked around and more squats), third one was 39 (oh dear nothing I was doing was getting it up), fourth one was 38 (went for a coffee and a longer walk), fifth one was 39 (ok good going back up) and the sixth and final one I had to have an ECG as well so lying on a bed with wires attached to my chest, arm and legs the machine was showing 37 (bugger!!!), lifted my arms and legs in the air waving them around like an idiot…41!!!  Yeah!!  I can go home!

I was also told not to do any training for the next couple of days as they weren’t really sure how my body may react.  They don’t usually have someone as fit and doing as much training as I do, through the door!  I guess you could say for them I am breaking new ground.  So today I haven’t done any training and boy I am missing it!

I also thought that yesterday would be a long and drawn out day…6 hours sitting in a hospital.  But I had a visit from my good friend Misha and her roommate Bron, which definitely passed the time, thanks ladies.  I also met the most lovely young lady who funny enough I had lectured to about MS over a year ago at Latrobe Uni.  She was a student in the 3rd year physio course and four months ago was diagnosed with MS herself.  I was extremely impressed that she had actually remembered me and even told me some of the things I had said…someone had listened!  She is young to be diagnosed but she is dealing with it beautifully.  She told me that she has graduated and I have no doubt that the passion she showed me yesterday about her emerging career will lead her to be an amazing physio.

So now we wait to see how I respond to this new drug and hopefully in the next few months those pesky little symptoms will go back into hiding!



About the author : CarolC


  1. crawford Jenkins 09/01/2013 at 2:43 pm - Reply

    Hi Carole — I have a solution to your slow heart beat as I have the same problem – too fit I guess. My normal heart rate is 62 bpm – resting about 48. However when I was in hospital getting a new Mitral valve I was all hooked up to wires and stuff and when I went into the bathroom to get ready for bed a nurse rapped on the door and asked if I was OK because my heart beat had gone to 212. Apparently all the monitors picked up the action of my arm when I was cleaning my teeth – that sure caused a stir in the nurses station. So – the next time you want to get your heart beat up all you have to do is brush your teeth.
    Hope they get your Med’s straightened out.

    • CarolC 10/01/2013 at 12:15 am - Reply

      Haha Crawford, I will remember that little trick!

  2. Marjorie Jenkins 09/01/2013 at 3:03 pm - Reply

    Carol, that was such an interesting blog. The old nurse’s curiosity was piqued again. I hope the Fingolomid does the trick. As usual, you amaze me. I’m so glad you are related to me, but I would want to know you regardless.
    Love you, Marjorie (your Auntie)

    • CarolC 10/01/2013 at 12:14 am - Reply

      I thought that might get your mind going! The nurses that day were certainly interested!

  3. Phyllis Banks 09/01/2013 at 7:32 pm - Reply

    I had no idea you were going through these problems.
    I certainly hope this new drug will solve your symptoms.
    You do keep these things to yourself, but I can understand why.
    Probably don’t want to worry us. Well I am worried anyway.
    I know you will stay positive and lets hope this is successful.

    • CarolC 10/01/2013 at 12:13 am - Reply

      I never want to worry anyone and with stupid little symptoms like these there is not much to tell. Anything major and you will know! Love you.

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