What happens to cartilage? does that get worn away also?
I read somewhere that most RA patients experience their most aggressive stage for the first 2-3 years, then it will settle, has anyone heard this?
If you have permanent damage, did you experience this in the early stages of diagnosis?
On my first visit to the Consultant, he took x-rays of hands and feet, would he have told me if there was any damage to be seen? and do they only re-x-ray when they suspect damage? do thet ever re do x-rays to analyse the progression of your RA?
Hi Williby. I can't answer your questions in full and to be honest they are ones I would like answers to as well.
However I am told by my GP and others whom I trust that damage is most likely to occur in the first few years of RA and that's why it's so important to go on and remain on our meds as a kind of insurance against the worst damage occurring.
However I don't think it shows itself up as damage for about 2 years on x-ray - and by the time it reveals itself structurally it's ireversable. I know my rheumy asked me at my telemed consultation if I'd had any x-rays taken yet and I said I had had them done of my hands last June and they were fine. He said we should get some more taken this time when he sees me at the end of the month (providing he does see me at the end of the month of course - no apt card yet?!). I know it looks and is different to the damage that OA does to the joints and cartiliage because it shows up in a way that is unique to RA - so the joint looks eroded and nobbly whereas RA is just worn down. My GP drew me a picture of how an RA damaged joint appears in X-ray and sometimes this is how a diagnosis of advanced RA is made.
I'm sure your consultant would have told you if he had seen damage. If they thought the disease was active for you they would surely take more to assess but as they believe you're in controlled remission they obviously don't think your RA is active I guess? Hope this helps a little. Tilda x
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Hi Wiliby and Tilda. Thanks for this info. I was puzzling over how they could tell the difference between RA damage and OA after the rheumy nurse made the distinction between my spine damage and my ankle damage. Now I know!
Hi Williby - I also believe it's mainly in the first few years that a lot of damage occurs, but not sure if that means the risk does really reduce after that. I had xrays done at the time of diagnosis (Sept 2010), which were all fine (results went from hospital to GP and I simply went and discussed with him). I asked the rheumy at the time how often they do xrays, and he said they used to do every year, but now generally do every two years.
Was going to ask at next appointment in August actually...I guess it's one of those things that differs from area to area!
My sister has an aggressive form of RA and the damage has been ongoing over a vast number of years. She was diagnosed at 17 now 49, she's already had various small joints replaced in toes and knuckles, one knee replacement which wasn't successful and put more strain on the other knee which is now waiting to be replaced. Her hands are closed like claws and this level of deformity has taken place over a number of years.
As for me, my lower spine is gone as has my pelvic girdle, I get xrays every so often to check what's going on, alas sadly no surgery is possible without the risk of putting me permanently in a wheelchair..... a risk both my surgeon and I are not prepared to take yet!
Here's my take on it.... Osteo is wear and tear, so just like lots of things that have lots of use everything just slowly wears away and you're left with roughened bone ends grinding against each other as the cartilidge that used to separate them has worn away, and the bone surface has got manky. And with osteo you can also get joints being deformed. The damage in RA is different, I think of it like a moth eaten jumper in that the out of control immune system just attacks bits of you (bone, joint lining, cartilidge, etc) fairly indiscriminately until the whole thing just collapses.
But RA varies. So you can get the fast burn one that chomps at you and then fades away, or the long haul version that just keeps nibbling. I'm not sure there's any way of telling how it will progress to start with, but I guess you learn what yours does over time. So some get damage early, and for others it's slower. But generally it does take a while, after all bone is pretty tough stuff.
X-rays will show up a certain amount of damage, but not hugely sensitive so doesn't reveal everything. For that you need scans. My rheumy told me that the initial X-rays were to provide a base line to check against later, and also most people have a chest xray as well to make sure that lungs are ok. For example, one of my vertebrae has been deformed since birth (a spina bifida occlusion) so the reference xrays make sure that they don't blame that on the RA. I don't think there's any hard guidelines about when they should be repeated, as depends how you are. Over the years i've had a mix of X-rays, ultrasound and scans on various joints.
Hope that helps, obviously only my opinion tho'. but you shouldn't be worrying yet as your remission is just going to get better and better! Polly
Hi, Wilby,
I have had juvenile form of rheumatoid arthritis, for 50years starting at 10. The reason the joints start deteriorating, is the imflammation of the synovial fluid around the joints, that RA causes. Hence when the disease is in flair, most damage is done, and that is why joints start deteriorating in the first few years while the disease is got under control. The Dmard and Biologic drugs have made a great difference to keeping RA in check, and the purpose of them is to slow down or stop further damage. As with most diseases, we all behave differently, no matter what drugs we take.
I had hips replaced at 27, hugely successful and knees at 35 and 38, I have since had these revised several times. For me joint replacement has made a huge difference to the quality of my life, however I did not start taking biologics until about 6 years ago.
I do not think xrays are very good for you, and definitely many fewer are taken these days, your consultant would definitely let you know if he/ she thinks there is cause for concern.
I personally feel, the younger and more active you are, coupled with not getting the RA under controll, the more likely joint damage, this is my experience.
Try not to worry to much about xrays excetera, good luck and take care.
Jennyx
Hi Wiliby,
I was diagnosed last month, my left knee is my most obviously affected joint. It was X-rayed in the Orthopaedic Dept. of the hospital back in March and did not, as far as I am aware, show much damage to the cartilage between my thigh and shin bones, just damage to my knee cap.
Then, after migrating to the Rheumatology Dept., diagnosis etc. I saw the Rheumy nurse and the Consultant sort of popped in. I had to ask to see the X-rays that they had taken a couple of weeks beforehand and got the impression that they had not actually looked at them!
I was pretty sure that I could understand what I was seeing but, again, had to press the Consultant to interpret the X-ray. He said that the cartilage was damaged - this was obvious: the 'padding' on my left knee was much thinner than that on my right - and that what I had was Secondary Osteoarthritis. In other words, as he explained, Osteorarthritis that isn't due to wear and tear but has been caused by my Inflammatory Arthritis attacking the cartilage so that bone starts to rub on bone.
It does seem to me that damage happened quickly. However, this would have been before I started on MTX.
I don't want to be x-rayed till I glow or to obsess about my flipping body but my experience so far is of having to ask for some things that I would have thought were routine. I tend to think that if there are things you need to know in order to get on with your life then ask, prompt and ask again till you get the answers you need.
Helix is correct. Osteoarthritis is a wear and tear disease that may affect one joint, after injury for example, or multiple joints after a life of heavy lifting, or a life of multiple injuries for example. Strictly speaking, it is not an "-itis" it is an "(arthr)osis": itis means something is an inflammatory disease which wear and tear isn't. RS IS an inflammatory disease involving the immune system, hence is a true arthritis. Anyway, that's a tangent.
I'm not sure about the speed of damage, why not just ask your rheumatologist this? That's what he or she is there for amongst other things. It would make sense if the worst years were the earlier ones because I believe that they are trying to get people on to anti-TNF as soon as possible nowadays. The reason mry rheumatologist gave was that it prevents the joint and tissue damage that is so widespread with RA.Unfortunately, the main difficulty with this is the the cost of course.
As for me, I had x rays done at the beginning as part of the the initial diagnosis but they've not been mentioned since. Maybe they do if joint swelling is not responding to treatment?
Hello, thank you so much for all replies!
Each of you have give me info that I found helpful, I like your description Polly about the 'moth eaten jumper' that makes sense to me; if I asked my Consultant I'm sure he wouldn't have give me such a good answer!
I've been in the mind frame of 'expect the worst and hope for the best' but in a positive way (if that makes sense!) I really have learnt so much from this site but I was alway unsure of this one and want to understand as much as possible.
It's helps getting different experiences/opinions as with RA nothing seems to be certain and for eveyone it's different.
It also occured to me that my knee still play up but without swelling or any other indications of the RA flaring up and wondered if it was damage from the early stages; as most of you know, my RA is in remissson now (medically) but for me it's still early days only being diagnosed Feb last year after only 7 weeks of symptoms albiet very aggressive ones.
So, I am very lucky but I'm not taking it for granted and realise it may be short-lived. But this does give me hope also, if my RA is a form that settles down within a few years and I was lucky to get it under control at early stages then maybe my outlook isn't so bad after all; I really hope this doesn't sound selfish as when I read about some of your experiences and it makes me very sad that some of you are suffering so badly....
It's the fear and anxiety of the unknown that I'm left with, this helps x
Ta. I'd meant to say that OA for me is when elbows wear out on your favourite jumper, and RA is when the moths get at it. Both unpleasant. But believe that you'll be fine, the power of your mind really helps too. Px
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Please don't feel that you are being selfish about being grateful for a remission Wilby. I'm sure I speak for all of us that this kind of news is really uplifting and worth celebrating. x
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