33 years ago this month I went to my GP with a swollen knee that kept giving way, I was 10 years old. By November I had had a biopsy and the diagnosis came back of Juvenile Rheumatoid Arthritis of the Rheumatoid type.
33 years later I have the same diagnosis but have added a few more labels - fibromyalgia, IBS, recurring bursitis, simple back pain.
I am one of the lucky ones - my JIA has been treated aggressively from the start, so although I use a stick and struggle to walk I could be a lot worse. Having said that, because my diagnosis is JIA I cannot access certain drugs; 33 years of NSAIDs has made eating and drinking a game of russian roulette; 5 years of steroids gained me 3 stone that just will not shift and tiredness and frustration are constant battles. The last month has been tough for reasons I'll leave for another blog/day.
I know I am not on my own with this but just wondering if others have experience of long-term JIA and what the process is for re-diagnosis?
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Elainef
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Hi Elaine and welcome, sounds like you have had some journey with RA. I was on steroids 2 years got off them in Dec 10, and started weight watchers in Jan 11 and have lost a stone to date, its very very slow, especially the older you get & not able to walk very far ! Helped me keeping food diary & drinking gallons of water. You sound like a strong brave lady.
Best wishes, Gina.
Hi Elaine, strong and positive, after 33 years that's probably whats got you through it all!
I was diagnosed at the age of 28 and thought that was bad enough so my heart goes out to you. Doesn't seem fair though that your treatments are limited and cannot access certain drugs that would help you.
Your right things could be a lot worse and that's what I tell myself at times, but you know what that doesn't really make you feel any better does it? You just want a quality of life and I understand that because that's something I have always had to fight for. needing operations when I was in my early thirties was often told "oh your to young for joint replacements" but all I wanted was quantity of life I certainly wasn't thinking years down the line. Thank goodness things have changed now.
Hope you find someone on here with JIA to help share similar problems and experiences.
Thank you for your comments and good wishes. Having the label 'juvenile' at 43 is not all bad I suppose!
Thanks for putting my worries and pains into perspective Elaine - you are very brave. Have you tried just going to your GP and asking them to refer you as if you were a new patient with suspect RA? Are the blood tests and x-rays the same for someone who has had JRA? I have no idea but it seems completely bizarre that someone like you has to convince any doctor that you still need support and treatment?
I see a rheumatologist every 6 months and he has talked about a re-diagnosis, I plan to ask him again when I see him this winter.
I have great support from my GP and the hospital team and to be fair I do wait until I am desperate to see them to ask for help which is probably not the best way of managing things. I will speak to them though and ask some questions.
I have to see my GP next week anyway because my latest NSAID made me very ill (Naproxen) so just on Mtx right now and pain levels are rising.
I think tilda has a good point. It's easy for gps to get into a rut and not look at you with clear eyes. I became aware of that with my move away from England. As a new patient in Scotland I was entitled to all sorts of new tests.
I feel for you having this disease for so long. I've only had it for 8yrs, but its bloody hard to try and get a quality of life and to be able to function, which sadly i'm not doing today. For me it looks like i'll be back in bed by lunch time.I feel upbeat one day and then the next feel in so much pain i don't know where to put myself.
I'm so proud of you to be able to kep going for as long as you have. You should be so proud of yourself. Forgive me as i'm not good, but i do try to see the possitive each day.
Nothing to forgive Sylvia. One of the great things about this site and NRAS is the fact that we can all share and understand just how tough living with RA is (in whatever form). I am a firm believer in finding the positive but some days the pain and lack of energy makes it nigh on impossible. Don't feel bad for feeling bad (easier said than done I know).
Welcome! I'm wondering whether you might have phoned the NRAS helpline for some advice about meds and re-diagnosis. I know a couple of people with JIA, both NRAS members, who, like you, have lived with the condition for many years. I think they both regard themselves as having RA now but I can't just remember what medication they are on!
The helpline may be able to put you in touch with someone in similar circumstances.
I have had RA for 23 years, gone through the meds and several surgical procedures along the way. Life has its ups and downs but at the end of the day it's what you make it. Clearly a lady after my own heart ... positive to the end!
Naproxine is very like aspirin. I was ill after 2 days and have an aspirin intolerance. There are many other analgesics that do not have this effect. Your dr. should be able to prescribe something different. Don't suffer in silence. take care Anne
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