JIA in Long time Remission been listening to LBC - Hi all

Options
stephensg99
stephensg99 Member Posts: 2
edited 28. Nov 2023, 14:05 in Living with arthritis

Hi everybody

My name is Stephen and I live in Singapore, but I am originally a Londoner. I still listen alot to LBC and have been listening to their support for this community and it prompted me to come here and say hi and maybe share experience

I just hit the big 50 this year but my experiences began when I was 11 back in 1980/81.

Over the years I had diagnosis of Pauciarticular JIA though to Ankylosing Spondylitis. It probably originally kicked off as a cracked patella from a Judo accident - I was quiet a sporty child, of course all that ended in my teen years.

I suppose I was lucky in some respects that I was under a very senior Prof. at Royal Free in London so I had lots of physio, drug treatments (NSAID) and at least most things in hindsight seemed to be focused in the right direction.

But that did not stop me having knee, feet, shoulder problem etc throughout my teens so it was a bit depressing and a lot of home schooling or using a walking stick.

Things got better around the 16-18 range but then worse again 19+ when I went to Uni. However, again I was lucky to be at Uni in Manchester and met some great people at Manchester Royal Infirmary and their Research Centre (Kellgren - not sure if called that then). That's when diagnosis more evolved to the AS and HLA-B27 positive, seronegative RA.

I was also over a number of years a regular at Moorfields in London for Acute Anterior Uveitis. The first time at 18 I went totally dark in one eye after 4 days, they said all I needed was an injection, that was an interesting afternoon being injected in the eye, I drugged me up so much I nearly flew out the hospital :)

At some point in my 20's I moved onto Sulfasalazine (DMARD) and the regular blood checks and that followed me on my work travels as I left London and moved to Brussels and then Singapore. I suppose the good thing is that I made sure I had an entire copy of all my notes and Royal Free wrote to all docs I got involved with.

Anyway about 2 years into Singapore in 2005 gradually regular pain just stopped being regular. I still had a stiff shoulder (ruptured rotator) and that still lingers today.

But 15 years on I have no pains, not taken any drugs in 15 years, yes I get the odd creaking but at the same time I am a regular at the gym - 3 times a week, well not during the current lockdown but I worked out today at home. My cycles rides are usually 15-20miles and I recently was able to deadlift and squat lift 2 times my bodyweight.

I say that because maybe people see it as a bit of hope. Sometimes it can just go away, I'm not complacent it may come back and I will be ready for it. But if your sporty child is 10 like I was, and they have JIA, it doesn't mean their sporty days are over.

Anyway say hi if you like

Cheers

Stephen😀

Comments

  • Chris_R
    Chris_R Moderator Posts: 800
    Options

    Hi Stephen welcome to the Arthritis community,Thank you for your story not everyone on this forum is as fortunate as you as they still have pain and inflammation,if I could ask you to be sensitive while you are chatting to others I would be most grateful.The most popular forums are Living with Arthritis and Chit Chat.

    Hope all goes well Christine

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • stickywicket
    stickywicket Member Posts: 27,719
    Options

    Hi Stephen,

    That's a really kind, thoughtful, encouraging first post. I love your realism in acknowledging that these good times might not last while being determined to make the most of them while they do. I was diagnosed at 15. That was 59(!) years and several joint replacements ago. I only really went into remission during my first pregnancy (a somewhat drastic 'cure' with long term consequences!) but it's fantastic that yours has lasted so long. Should we all move to Singapore???

    I apologise in advance for probably not replying to any further posts. I used to be very regular on here but, due to Covid19, I find myself extremely busy these days and merely an infrequent 'lurker' on here but I had to reply to your encouraging post. There is so much negativity about arthritis. It's great to hear the positive things.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright