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My Experience with JDM

I first got diagnosed with JDM when I was 2 and a half years old and I always remember my Mum telling me that she first noticed the distinct red rashes on my knuckles and my eyes. I recall her telling me that she took me to see lots of different doctors because nobody knew what was wrong, but in August 2001 she was told by GOSH it was Juvenile Dermatomyositis. I was then admitted to Great Ormond Street Hospital where I had a muscle biopsy and started on Methotrexate and steroids. I don’t remember much else as at that age you don’t care about what others think about you or that you don’t look like everyone else; you just simply want to be a child and do everything a child does. However, the high dose of steroids made me put on so much weight and I could never keep up with any of my friends; resulting in me always being at the back tagging along. Therefore, I stood out from all of my friends.

After lots of physio and regular check-ups at GOSH and my local hospital and taking Methotrexate for 4 years, I was free from JDM in February 2006. You’d expect that it would never return after such a long time of being free from JDM. But you’d be wrong.

It was June 2014 when I first began having symptoms of JDM where my legs really ached whilst I was walking and going up the stairs, my arms ached, I struggled to hold my back up straight and my neck hurt to hold it up. I had an emergency appointment at GOSH the following week and the doctor told me that he didn’t think I actually had anything wrong and something in my brain told my body it was in pain. He made me feel as if I was making it up, it was horrible.  

Over the next few months I was introduced to a new doctor who is a Consultant for Adolescent Rheumatology and in charge of the transition process for teenagers from GOSH to the University College London Hospital. I had an MRI scan in October 2014 on my thighs, but it never showed any inflammation and then at the end of November I had another appointment where the doctor put me on 30mg of steroids where I had to take 6 tablets a day as well as lansoprazole. He thought that if the steroids made me feel a bit better within 2 weeks then it would be JDM. Me and my mum were completely bewildered and unsure as I knew that as I was on such a high dose of steroids, it would make me put on more weight. Two weeks later I had noticed a difference because I wasn’t as stiff getting out of bed and I could get up the stairs much better. So, the doctor decided to put me on a reducing programme of steroids for up to 3 months and see me afterwards.

At first when I was on 4 or 5 tablets, I definitely noticed a big difference and I felt more mobile, but when I got down to 1 or 2 steroids a day, I felt a lot worse where the stiffness in my legs came back and my legs hurt to walk and I was completely unable to get out of the bath without the help of my mum. By March 2015, I had finished the reducing programme of steroids and I felt like I was back to square 1 all over again because the steroids had made a difference when I was on a high dose, but now I was on nothing. I felt like I did before I went on them.

I precisely remember that on Friday 10th April 2015, the doctor diagnosed me with Juvenile Dermatomyositis because if the steroids had worked by making me feel better, then it shows that there was inflammation. Yet again I was put on more steroids and I was now waiting to go to GOSH for the 2 week physio therapy programme. In July 2015, I went into GOSH where I had to do physio every day, I found that it really helped me, although it was very tiring. I felt good that I could make friends with other people there who were in a similar situation that I was in, although no one had JDM, but there were people who understood.
Whilst there, I began to take 15mg of Methotrexate every Friday and at first I had no side effects, but over time they become worse and worse. Every Saturday I would feel sick and I couldn’t enjoy my weekend like everybody else and every now and then I would have a complete loss of appetite. At first, I was very apprehensive about injecting it into myself because every Friday night I would get myself so worked up and feel very sick, but now I’ve just learnt to accept it and it has become part of my routine. I’ve been on 17.5mg of Methotrexate for a month and then I went on 20mg for a month. The transition to each higher dose has really taken its toll because it has made the sickness much worse. Even though I take anti sickness tablets they don’t always seem to work as well as they used to. I’ve found that it ruins my weekend as I never usually feel very well.

I’ve had a few steroid injections to help with the pain, but I’ve never felt that the injections or the methotrexate have made me feel any better because I’m still unable to get out of bed in the morning without the help from my mum because my legs feel very stiff and they seize up. I’m stiff getting out of a chair, I am unable to get out of a bath without help and I can’t stand for long without my legs being in pain. This frustrates me the most because the pain that I’m in affects everything that I do and it annoys me that I can’t keep up with my friends.

At the moment I’m awaiting an MRI scan to see if I have inflammation causing muscle activity or whether the muscles have been damaged due to the previous flare ups. By having Juvenile Dermatomyositis, I’ve found that it’s made me grow up a lot quicker and it has made me who I am today. I think it’s played a part in me lacking confidence because I don’t have many friends and I don’t do certain things due to me feeling ill either because I’m in pain or from the side effects of the medication.

I just hope that one day I don’t need to rely on medication and that I won’t be in pain which would enable me to run up a flight of stairs one day.

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