New member, had arthritis since I was 5

emily15

Hi everyone,

When I was 5 I had a massive flare up on my knees, when I was 6 I was diagnosed with Juvenile Idiopathic arthritis in both my knees and left wrist.

Went through ongoing treatment, physio, dosed up on liquid ibuprofen, steroid injections etc. It was horrible, I remember struggling to join in with my friends, I couldn't bend my knees properly as they were so swollen, I couldn't squat down onto my knees like any other normal kid, I couldn't sit on the carpet with my legs crossed like everyone else, I had to sit on a chair.

I soon got used to my pain and always remember my parents saying how well I dealt with it and didn't bother them much.

The doctors always said I'll grow out of it...in my early teens I thought I got to that point, the pain started to ease, I was on naproxen, I felt like the doctors were right. and I got discharged from the hospital

When I was 17, I noticed them starting to hurt more, like a constant ache and shooting pains, I went back to the hospital, they done a MRI scan and it came back that I didn't have much inflammation on my knees which I was confused by. Nonetheless they done a steroid injection in one of my knees, the following day I felt like I was cured, this is what a normal 17 year old knee feels like, after about a week I started feeling pain in that knee, went back to the hospital, and they put me on Hydroxychloroquine twice a day, then I went back and they also put me on Sulfasalazine four times a day. They are both DMARDs.

I feel like this has helped to a certain degree, due to COVID I was unable to have a check up etc, I am now 21, I went for a check up last week to see if there was anything else they could do, I had an X-ray and got prescribed Meloxicam which is a NSAID and Omeprazole to help with stomach acid.

The ache feels worse, constant harsh ache and bad stiffness, I feel very tired and fatigued, but these aren't a side effect of the new tablet.

I have lived with it for 16 years and now I am at a point of I don't know what else to do, it sounds like there isn't much inflammation, but what else could it be!?

Also, I have Crepitus which started happening in my teens, if I stretch out my legs my knees crack really badly, that doesn't cause pain, has anyone else experienced this?

Anyone else been on Hydroxychloroquine, Sulfasalazine, or Meloxicam?

Anyone have any advice? Thank you for reading xx

Anna

Hi @emilygleeson and a very warm welcome to the online community!

You’ve lived with juvenile idiopathic arthritis since the age of five and it sounds like you have had quite a journey from such a young age - I’m sure you’re Mum is right that you deal with it really well. You’ve been on various medications and are now on DMARDS and Meloxicam and are wondering what else you can do.

All the members of the forum are living with some form of arthritis and really understand how you feel. Since it’s a disease that often changes over the years, we often have to change medications to counter it. I’m sure many of our members can share with you their experiences of the various meds they’ve been on.

Theres a really useful page on the Versus Arthritis website that you might like to have a look at - it talks about all the drugs, including the new biological drugs that some say are a game-changer in terms of managing our condition, and it also looks at self help treatments and complementary therapies. Some of the suggestions may be worth discussing with your rheumatologist.

https://www.versusarthritis.org/about-arthritis/treatments/

You might also be interested in having a look at ( or posting in) the Young People’s Community ( link below) where you can have a chat to other young people who will know how you feel.

https://community.versusarthritis.org/categories/young-peoples-forum

Good Luck, and do let us know how you’re getting on,

Anna ( Mod)

frogmorton

Hi @emily15 lovely to meet you!

You have had quite a journey haven't you?

I bet it seems frustrating that you appear to have no inflammation, but pain. Did they do any imaging? X-rays/mRI for instance? Good to hear the steroid injection helped you so much even if it was short-lived.

Please do come in and join us we are a friendly group here and have plenty of experience between us🙂

Take care