RA & Long Term Joint/bone Damage: Hello, I was... - NRAS

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RA & Long Term Joint/bone Damage

Rashford20
Rashford20

Hello,

I was wondering how long it took for some of you to experience long term joint/bone damage? There’s a lot of conflicting information online (as per usual) and it would be good to hear from some actual real people regarding the issue. I know it will be different depending on age of diagnosis etc, my disease has been active for over 6 months now and I had a steroid injection yesterday and feel like I could run a marathon today! Being in my 20s my joints and bones still seem very healthy but I’ve got a bit of deformity starting in my fingers.

Thanks!

14 Replies
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Hello. I’m late 40’s just diagnosed. My GP thinks I’ve had it since I was 18 and was misdiagnosed with RSI (repetitive strain injury). Apparently my joints are undamaged this far apart from age related. My view is if I did have it I am glad they didn’t diagnose it because it could fundamentally changed what I did or didn’t do with my life. I haven’t suffered for not being diagnosed then. I took the occasional ibuprofen and did stretches if the ‘RSI’ flared up.

Btw I had my steroid injections a week ago... not with you on the marathon lol but there is a good improvement in pain and movement. 😁

Ive had RA for 12 years now. Apart from a little swanneck deformity on my fingers I haven got any other joint damage.

I've had RA for 18 years. Difficult to recall exactly, but think I first noticed deformity in my fingers several years after diagnosis. Joint erosion continued at a slow pace over a number of years before speeding up during a 5 or 6 year period when my RA was poorly controlled resulting in some serious deformity to hands and feet. Erosion seems to have slowed down again since my RA has been better controlled for the past 2 years.

To be honest I can’t remember how long, I think it was over the years as drugs failed me that gradually joint destruction occurred. My hands, wrists, feet and ankles are a mess but it didn’t happen overnight.

Please don’t run a marathon 😁 take care of your joints .

That's difficult because treatment has improved so much recently. People who started with the disease many years ago will have had only DMARDs for treatment - there are so many biological treatments now. So the likelihood of damage is higher the longer ago a person developed the disease and there are some people in our Gwent group who have quite severe deformities.

The other variable is that some people seem to have a much more destructive form of Rheumatoid Disease than others. I know I have been very fortunate in that I have had it a long time but have little deformity due to erosions.

I remember my auntie in the 80/90s had it particularly in her feet and she had some toes removed because the discomfort was so bad and so was her walking. She always regretted it saying she wished that she had never had the operation and after that, walking was awkward for her.

AgedCrone
AgedCrone
in reply to oldtimer

That is true..I was diagnosed back in thé 1990’s & didn’t progress on to Biologics until 2016...but most of my joint damage is in my Wrists/hands.....& it’s osteo arthritis....not rheumatoid damage.

As with all things R.A...everyone has different experiences.

The common response is it depends on how soon you were diagnosed following first symptoms, how severe your particular one is & how you respond to your meds. The trouble with that is not everyone has obvious symptoms & they could have had RD bubbling underneath the surface with them thinking they've just a few niggles here & there or 'strained' something. If you are diagnosed promptly there's no guarantee you'll be brought under control quickly, this is the ideal, what is needed to hopefully avoid damage. This said not everyone's RD experience is the same, there's no crystal ball to see whether or not you'll have damage in spite of being textbook.

One thing that won't help is if you take this steroid holiday & run round like a madwoman catching up on everything! They're the sticking plasters of our RD world & can lull you into a false sense of security. You still have active disease & the possibility of damage being caused, they don't have effect on the disease like DMARDs can. So, enjoy the freedom from pain but don't be tempted to overdo things.

The imaging you had done when first diagnosed are helpful to your Rheumy in two ways. It helps with forming your diagnosis & they serve as a baseline, how much damage or how many erosions you had when first seen & when retaken.

I've been diagnosed 12 years & the only erosions found at that time were in my feet, the only painful joints I had when I first saw my GP & when diagnosed. They continue to be the worst affected joints but I've not needed surgery there or on any other joints, so it's not a given you do.

I'd not concern yourself with looking to the future worrying whether or not you'll have damage, the here & now is what's important just now & doing all you can to help yourself (keeping to a healthy weight, exercise, healthy eating etc) as well as taking your meds. Adjustments will be made if or when needed to help protect you & keep you having all as it should be, as normal a life as possible, that's ultimately the goal.

You probably know but limiting steroids is key to avoiding bone damage. Obviously if you need them your Rheumy will give them, either oral or by injection, but longer term they're not good for your bone health. Usually they're given to bring some sort of control if your normal meds aren't doing so, in this way they can be very helpful. Some do need them as part of their treatment though, myself included, but our Rheumy's ensure we have DEXA scans to keep an eye on them causing issues with bone density/porosity. But, again, there's no need to concern yourself with that just now because the future you may not be having to face it, I hope not anyway.

I have severe deformity in my right hand mainly my fingers and just starting to get it in my left hand, mine started around a year or two years in from me first being diagnosed, Unfortuentley my consultants kept leaving The first one i had was great but then they got worse i kept putting it out to the last consultant i had before i got my new one but he just kept ignoring saying there was nothing wrong i only started to get something done because my friend who works at a gym told me to ask for physio off them, i asked him and he said he wont do physio as it could be too much so he put Me through for hand therapy instead it was only then when i saw the hand therapist that i got told that my hand was as bad as i had been saying she wasnt happy at all with how bad it had got luckily she told me i was having another new consultant but this one had worked there before and was one of the best and that he would now be my consultant for good rather than me having to go back and forth with different ones. I think mine was caused by being ignored and not being on much treatment i was on very lose dosages for how active my disease was, ive had a few steroid jabs and like i feel like i can run a marathon after them they work wonders on some people but as far as im aware they wont prevent joint damage just keep an eye on it if you think damage and deformity may be happening get on to your consultant the quicker you tell them

The more chance you have and preventing more damage and reverse any damage thats been done they can put you through for hand therapy where you will be given exercises you can do from home to help out Unfortuentley because mine had been left years the exercises havnt worked very well so i still have a really bad hand but if you have recently been diagnosed then hopefully the better chance you will have if its caught sooner rather than later of course im no doctor so i cant guarantee it will help but its worth a shot asking for some therapy if you think deformity is starting to happen ive been put through for more therapy on my left hand to try reverse the deformity once this covid has settled It will be a case of getting the correct meds that suit your body as well :)

As with so many others I had niggling pains in my wrists for years. About 20 years ago I had bloods taken which showed elevated RF but was told to go and live my life. Things escalated. Fluey feelings, fatigue, increasing pain in wrists and hands until diagnosed November 2016. No deformities apart from slightly swollen knuckles. We're all so different in our experience, symptoms, treatments etc that there is no way of foretelling what the future holds for any if us. Enjoy what you can, while you can. Seize the day!

My fingers are a funny shape now and also my feet. I have toes that are making a v shape now instead off straight toes. I have had RA for 7 years. But I was late getting a diagnosis. I had RA for about 15years before or more.

If the disease is well controlled then there’s no reason that you will get joint damage. Ever! There days your docs “treat to target”. And the initial target is usually no disease activity. If the disease is not active it can’t damage you.

As other have said there can still be a low level activity in the background that can slowly cause damage. But far too early for you to think about that.

When I was first diagnosed all my joints were so awful I thought they were permanently damaged, but they weren’t. The only damage I have after 10 years is a toe - which happened when I was trying to taper off drugs - and primary and secondary osteoarthritis all over the place.

My little fingers were both deformed (bent) before I was diagnosed at age 6.

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