JIA

[Bionic1]

I have suffered with Juvenile Idiopathic Arthritis for 38 years from the age of 14. All joints affected & I guess the name Bionic1 gives the rest away lots of ops & joint replacements.

[Gnarli]

Welcome to the forum although I wish you hadn't needed it. I've found this to be a friendly, supportive and lively group full of informed and helpful people happy to listen and share.

[Bionic1 in reply to Gnarli]

Thank you

[KittyJ]

Hello and welcome to the group Bionic1 😊

[Bionic1 in reply to KittyJ]

Thank you

[Kags1068]

Hi Bionic1

Nice to meet you!

It's spooky as your 'bio' describes my experience too!🙂

I was diagnosed just after I turned 14 back at the end of 1982. So, it will be 38 years for me later this year. Like you, I have also had joint replacements and many other ops.

If ever you want to swap a few tales, please feel free to get in touch.

Best wishes 😊

[Bionic1]

No way how weird is that. I'd like comparing notes 😁 . Feel free to message me anytime & I'll do same.

Would you believe never spoken to anyone with JIA in all the years I've lived with it.

Thank you

[Kags1068]

Haha - very weird!! To be honest, I knew there were obviously others out there, but I've never really met any either. Especially someone who was diagnosed at a similar time and may have had similar experiences and also observed the way things have changed. There used to be 1 girl a couple of years or so older than we who went to the local clinic for a while, but our interaction was very limited and that was over 30 years ago! Whilst I've been a member of the site for a while, I've mainly lurked in the background reading people's posts. I finally posted for the first time last week! I don't use any other social media, so that was a big step - haha! 😉

I must say, the people on the site do seem to be very friendly and supportive of each other.

I've never messaged anyone direct so have no idea what you do! I'm not sure if there is a button to message on everyone's profile page? As you can see, I'm no tech expert ......!

[KittyJ in reply to Kags1068]

Yes Kags, click on the persons name and you can message privately from their profile page 😊 on my phone it’s two speech bubbles.

[Bionic1 in reply to KittyJ]

Thank you KittyJ

[Kags1068 in reply to KittyJ]

Hi Kitty

Thanks for that tip! Much appreciated 😊

[Bionic1 in reply to Kags1068]

Yey go you !!😃 I've been having biological treatment anti TNF etc for nearly 20 years now I'm pretty much stable (touch wood) .When I questioned why I couldn't come off some of my tablets was basically told that the damage to my joints pretty bad & most of my pain is due to that. If only they had these treatments 30 years ago .

Nevermind think I'm used to it all now had it longer than not having it ...does that make sense. I'm the one that doesnt really talk about it if anyone asks How are you ? Answer is always ok thanks or not to bad I've had some looks from my Mum over the years shes always knows when I'm not ok 😃

[Kags1068 in reply to Bionic1]

Hi Bionic1

I think I sent you a personal message yesterday, but can't be certain!! Realised I hadn't answered this post so here goes.

I haven't been on TNF as long as you - only about 12 years! You must have been on them from the very beginning. My Consultant was very cautious, and wanted to wait a while.

Yes, if only these treatments had been around back then instead of just the Gold and Penicillamine!! Although even then, older people who had been poorly for years used to say to me "if only those treatments had been available earlier ....." I suppose that happens in each generation!

I get precisely what you mean about having it longer than not. It's really interesting you say that, as it's something I've often discussed with my husband. It's like a before and after life, with the before gradually becoming more of a distant memory?

Like you, I hate discussing it with people and will always say 'I'm fine, thanks.' What else can you say? If anything I'm more comfortable trying to joke about it, I think that often puts people at ease.

Happy days, eh?!😁

[KittyJ in reply to Kags1068]

Oh my! I’d forgotten (how could I) about penicillamine and gold injections. So long ago.

[Kags1068 in reply to KittyJ]

Haha - indeed! How could you forget such lovely treatments! I still feel nauseous at the mention of Penicillamine- ugh!!😊

[KittyJ in reply to Kags1068]

🤢

[Kags1068 in reply to KittyJ]

Haha! Precisely😁

[KittyJ in reply to Kags1068]

You never hear of them mentioned nowadays, things have moved on to so much better drugs.

[Kags1068 in reply to KittyJ]

I know. I wonder if they are ever used still? As you say, thankfully much better treatments now. I still have bad memories of being woken up every morning at 6am as a teenager, in order to take the dreaded Penicillamine at least an hour before anything and on an empty stomach- yuk. My poor old dad had the job of waking me every morning before he went to work. It didn't make him very popular- haha!😊

[Bionic1 in reply to Kags1068]

I've tried that . I can remember having Gold injections in my bum ..ouch as with alot of meds all worked for a while then something went wrong i had an ulcer from Volterol !!.

[KittyJ in reply to Kags1068]

Poor dad 😬 Gold injections gave me such big mouth ulcers that I couldn’t eat, despite this I carried on and on. I don’t know why, I suppose it was enabling me to move and live but today I’m surprised that I put up with it. Just did as I was told 🤷🏻‍♀️

[Kags1068 in reply to KittyJ]

Yes, I got the mouth ulcers too, and protein in water which meant it hadto be stopped. Didn't really work for me either though.

I think you are dead right that we were just told what to do much more, and we just accepted it. Isn't that funny? 🤔

[KittyJ in reply to Kags1068]

Yes I had the protein too, both worked for a while but eventually it gets too much and you have to stop. Never mind, I’m still here and still trying 😂

[Kags1068 in reply to KittyJ]

Yes, me too! Onwards and upwards, eh?😁

[Timmy45]

I think we are of a similar age. I was born in 1968 and developed JIA at age seven in 1975. I have gone thru all the biologics etc. But my disease has been difficult to control. So I have had wrists fused, knuckles replaced, thumb fusions, double knee replacement and double hip replacement. I remember being the only child at my appointments.

[Kags1068 in reply to Timmy45]

Hi Timmy45

Sorry you've had it since aged 7 - bit crap to say the least! Like you, mine has been very aggressive and hard to control. Have had feet, ankle, neck, hand and shoulder ops, plus 2 new knees and 3 hips. Such fun, eh? I've also had eye complications too. Thankfully though, been having a reasonably stable spell for a months which is quite unusual but very welcome! Hope you are keeping as well as possible🙂

[Bionic1]

O wow 7 !!

I was born in 68 as well . Like you many ops also fractured my femur years ago which hasn't really helped.

Wrists fused . Knuckles renewed but now ruptured double knee replacement 4 hip replacements 1 shoulder replacement ankle fused...Oh my word when you see it written down it surreal 😃. Few more ops on the horizon basically because of damage.

Sent to adult clinic when I was 16 I was the youngest as well.

[Kags1068]

Hi Bionic1

I think I sent you a message the other day - not 100% sure, but hope I got it right!🙄

Hope you are well

Take care😊

[Bionic1 in reply to Kags1068]

Yes you did . I have written back but not sure if you've seen them. Hope all ok.

Take care 😃

[Kags1068 in reply to Bionic1]

Hi again

I managed to reply yesterday at my second attempt! Am letting you know here as well in case you get this notification first!

Hope ur ok😁

[Kags1068]

Yes, I have and think I've just sent my second message attempt instead of losing/accidentally deleting it this time!🙄

[Bionic1]

No other messages from you Kags 😂