Wednesday, December 21, 2011

One Year of Copaxone

Wow, can you believe it?  I hardly can.  I have now injected myself with Mr C 370 times... For those of you scratching your head as to what this milestone is, I have been injecting Copaxone for Multiple Sclerosis for a whole year.

I can remember being utterly devastated at the news given to me by my neurologist just over a year ago now.  I had come to accept I had MS, but mostly, from day to day, I could ignore it and get on with my life without anyone really needing to know about it.  I only had sensory symptoms - weird tingling, buzzing and sometimes a first thing in the morning Lhermitte's sign.  Most of these symptoms I put down to other things.  Once I was chatting to my husband about the tingling you get after exercise and he looked at me funny and said, well that must be an MS thing.  So, as you can imagine being told by my neuro that I had some activity going on in my brain (I'm pretty sure he didn't mean thinking!) and that I needed to start medication to calm the inflammation down, spelt out the worst impending doom in my book.

I was point blank, scared out of my wits.  I think while I managed to keep a lovely calm exterior, internally I was preparing for the worst.  I read up about Mr C on the net and found a multitude of nasty symptoms to email my neuro about... he replied calmly and sensibly (of course)... but how could all those opinions be wrong?  Yet I knew I had a responsibility to my young family to stay as healthy as possible for as long as possible, thus I knew I would start Mr C and persevere with it.

I remember C day clearly, as if it was yesterday in fact.  My family were all at home and we ever so patiently waited for the MS nurse from MSWA to arrive.  She came in a little white car, was really tall and introduced herself as Ann.  She spent a very long time talking through our concerns in a laconic, yet laid back style.  She knew what she was talking about and this put my mind at ease.  But then it came time for her to give me my first injection.  It seemed to me like she dawdled, dragging it out, when all I wanted her to do was press the auto inject and fire Mr C through my skin and into my fat cells.  I guess time slows when you are experiencing extreme anxiety.  When she finally did press the button, what I felt was nothing like a bee sting, which would have required that I jump up and down and swear quite a lot.  About a minute later a slow burn commenced and a red spot developed.  The red spot grew and finally developed into a welt.

In the beginning, my injections didn’t tickle, but were nothing like a bee sting.  I rotated my injection sites as suggested and would do my stomach, hips and thighs.  I was advised not to do the backs of my arms, firstly because how can you inject the back of your upper arms and secondly because I like to wear sleeveless tops.  The injection sites usually turned into big welts, which lasted a few days.  Sometimes, a few days after the welts disappeared the site would begin to itch.  But you know what, I don't get the welts now, the injections don't sting at all - in fact sometimes the only way I know I have given myself the injection is to check the syringe is empty and unless I am doing a completely new injection site, I don't itch either.  I have given up doing my thighs, because I don't want to risk the dreaded lipoatrophy or pots holes on my thighs because I like to wear bathers/swimmers/a swim suit/cossie/togs in summer and it winter too, for the kids swimming lessons.  I try my hardest to rotate injection sites on my stomach and hips, but I'm a bit too lazy to do the whole diagram thing and mark the exact location of the injection to make sure I don't hit that spot again in four days’ time.  I also know that when I keep a list about certain things I will become obsessive about them... and I don't need that crazy business going on right now.

So since being on Mr C I have had one full MRI of my spinal cord and brain.  My neuro was unconcerned by a small lesion which was not active and did not request that I come in and see him.  I took that to mean Mr C was doing his job and would remain in his fulltime permanent position as a decoy for my immune system.  I have another MRI booked for June/July.  I'm not concerned as currently I have no new symptoms.

So what have I learned in this year of daily injections?  I have learned that there are a lot of websites and social media pages out there that obviously want to help people with MS, but do no more than breed fear through inaccurate information and personal opinion.  I have learnt that many people with MS do not know much about their disease and therefore are frightened by going to these websites and pages.  I have learnt that many people on such websites and social media pages will only talk about their WORST experiences with MS and MS medication.  I have learnt that the average Jo or Joe does not necessarily know the things that I have learnt this last year - that personal experience and opinion does not equal fact about MS.

If you are reading this and you have MS, I beg you to go to highly regarded and well known MS websites where facts about Multiple Sclerosis are recorded and read up on them. Your homework is to get to know your disease.  If you are feeling mentally strong enough, then brave the websites and social media pages where fellow MS-ers write about their personal experiences and voice their opinions.  But if you are feeling fragile then I would suggest that these opinions and personal experiences are not a good place to be.  After all, your personal experience will be different to everyone else - because you are different.  You are not going to know how something will affect you until you have experienced it yourself!

Shall I get off my soapbox now?

I just think about all the worry and concern I spent pondering what might happen when I started Mr C, such as gaining weight and know now that I could have saved myself a whole lot of mental anguish.  I bet many of those people who put on weight while taking Mr C, just started eating more or exercising less but attributed this weight gain to Mr C... you just don't know other peoples circumstances.  However I know myself pretty well and I will continue visiting these web pages that cause me mental anguish, but not because of the problems that Mr C could cause me gleaned from other peoples experiences.  But rather due to ill-informed people with MS teaching and informing ill-informed people with MS. 

Anyways my lovelies, yay me for injecting myself for 12 months! 

Merry Christmas, have a safe and prosperous new year and thanks for reading.

12 comments:

  1. you are an inspiration and I had no idea you were doing this, least of all DAILY!! Youre an amazing chic and even though we dont get to see each other as much as we used to, I'm glad we crossed paths to learn a little bit of how the other half lives. Have an awesome xmas guys. xx

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  2. Thanks Nat. Merry Chrissie to you and your family too.

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  3. So glad that it has been working for you, and that you have been able to avoid the dreaded side effects!! And fantastic news about your MRI and lack of lesion activity ... Here's to an even better new year for you and your family.

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  4. Dear Lee-Anne
    I am also a 70's baby living in Perth. I was diagnosed in June after my first crisis and unfortunately had another one in October. My neurologist has decided that I should start with copaxone. I am as you were, scared to death, for this reason reading your blog has been an inspiration. My C day is going to start in a couple of weeks and I hope also that rather than ruining my life is going to be something that will help me keeping stronger and healthier. Thanks for sharing the positives, as you say when people share their experiences is usually to talk about the negatives. Thanks so much, Begona

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  5. Hi Begona. Sorry I haven't replied sooner. I'm sorry you have been diagnosed with MS. You are going to feel terrible for a while yet, but know that there is HOPE and a life after diagnosis. Who is you neuro? Starting Mr C was hideously scary, but now it is just one of those routine things I do every day. Sometimes I don't even feel Mr C's tickle!! Maybe one day we can catch up and chat.

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  6. Thanks Lee-Anne for the reply
    My neuro is Professor Blacker un Hollywood Hospital.I would be very happy to catch up with you one day. Let' s see how I cope with the satart of Copaxone

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  7. Let me know how you go Begona, ok. I see Prof Kermode. I recommend him to all my MS friends. Also have you read any of Prof George Jelinek's books. I know I have dished him in some posts, but he has done the research that clearly shows a link between saturated fats and MS activity. Diet has no side effects. Has your neuro checked your vitamin D levels? Good luck with Mr C. I hope he plays nicely for you. xx

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  8. Hi
    I have started with Copaxone (only two days) and all my expectations were that horrible that I am positively surpried (need to stay positive). For the moment the injection itself it is something that I hardly notice, and the itching after that is bearable. Let's hope it continues like that. I will keep you informed
    Thanks for the positive input that your blog gave me before starting!! Begona

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  9. Hi Lee-Anne
    I have started with the Copaxone. No problems with the needles or the itching but I feel really tired and I feel like if my muscles were weak. did it happen to you? If so? Is it permamnent or will it tend to disappear?
    thanks. Begona

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    1. Hi Bergona. Thanks for keeping me up to date. Um, I don't recall having any tiredness or muscle weakness when I started Copaxone. I would say if it gets worse or you continue to be worried call and ask your MS nurse about it or perhaps the Copaxone Team. (Have the MS nurses and Copaxone Team being calling you to check you are ok?) I would also think that if it was a Copaxone effect you are experiencing, it may just settle down with time. But every one is different. I am glad my blog helped to keep you positive about starting Copaxone... that was my intention, as there is just so much negative stuff out there. I think people find it far easier to write about the negatives and just forget the positives. Again Bergona, good luck.

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  10. maggie.danhakl@healthline.comJuly 2, 2014 at 11:46 PM

    Hi Lee-Anne,

    Healthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.

    You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this

    We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we'll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.

    We would appreciate if you could help spread the word about this by sharing the You've Got This with friends and followers or include the campaign as a resource on your page: http://lumpycustard101.blogspot.com/2011/12/one-year-of-copaxone.html

    Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.

    Best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

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    Replies
    1. Hi Maggie. I've written a short post regarding your website. Cheers Lee-Anne

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