there's been some uncertainty about whether or not my knees have sustained permanent damage ('secondary' osteoarthritis & possibly other types of damage I don't understand yet). Saw my Rheumy today and he was adamant that such damage has occurred.
I've had 3 sets of x-rays this year: end of February, early June, end of August. Knees were okay in February but damaged by June 11th so if the Rheumy is right it took two and a half months for loss of cartilage, significantly reduced joint spaces & lipping to occur and by August it was worse still with some sort of hole beginning to form(!)
Unfortunately my time was nearly up (consultation-wise, not life!) by the time we got around to this issue so I'm left feeling very confused. My Rheumy's explanation for the speed of damage was that my quads had 'collapsed' because, presumably, of immobility caused by my PsA. But I was very active indeed up until this year & continued to walk & exercise as much as I could once I got ill except for about 2 weeks in April when I was almost completely immobilised by a nasty flare or something. In fact I had worried that the strenuous Yoga class I kept going to till about mid-March might have been partly to blame for the damage.
Has anyone else experienced something similar? Especially with knees, due to wasted & therefore unsupportive quadricep muscles?
Thanks so much Carole. I've sort of known for some time: I had to ask to see the x-rays back in August & then I asked about the reduction in joint space & my Rheumy said yes, much reduced, very speedy damage & later put more detail in writing.
Then a few weeks later I saw a private Rheumy who was very good, very proactive re. treatment, but said the x-ray images are unreliable as my knees are so swollen it is hard to get a true picture. I was sceptical but obviously I really wanted to believe him!
Then back to square one today when NHS Rheumy was so definite. And looking at those images again I couldn't disagree. I'm sick of thinking about my illness but things keep happening that require thinking & adjusting. But I'm sure you know exactly what I mean!
Much better to be proactive than reactive. I admire your spirit.
Hi - firstly I really am sorry about this news Christina. I know how much you wanted for this not to be the case and of course it's all of our main dread that damage will occur to joints. In my case I worry most about my hands and wrists but it matters not which joints are affected - - its just terrible to have sustained permanent damage anywhere. And that it can happen in such a short interval is really scary for you too. It sounds to me as if you've actually had PsA for a long time without anyone realising. I certainly don't think you should blame yoga or yourself for trying to keep mobile and fit - this has probably helped you a lot but the disease has been too aggressive for the exercise to do anything more than support your joints a little by building up muscle tone. Tai Chi is much less aggressive on the joints and it might be a good idea to check out this and Pilates as alternatives now to keep yourself mobile. I like tai chi (don't work very hard on it though!) a lot because it engages the mind more than yoga did for me.
You don't say what your NHS rheumy plans to do for you now though? Are you going to be starting on the other DMARDs as private guy thought necessary or can they fast track you onto anti tnfs? And can they operate on your knees to clear away some of the damaged cartilage or even give you knee replacements? Many on this site seem to benefit enormously from larger joints being replaced. But I'm supposing that they need to get your PsA better controlled first? If you have already sustained this amount of damage in such a short space of time then surely that puts a good argument up to get you straight into the biologics and not waste any more time?
Was the NHS rheumy better with you this time for having the private guy's forceful input? And were you as assertive as you wanted to be? Sorry for all the questions - maybe you will blog or email me so I can get the full picture?
I won't be able to go in wifi much until I'm home on Saturday but have a little spot on the terrace where I go to pick up. I'm covered from head to toe in bright red bites and itchy heat rash and yet I don't feel sweaty of overheated so am wondering if the MTX is playing a part? You would have thought that the biting things would find me absolutely disgusting and drop dead at the first taste with Hydroxy and MTX flowing through my blood!? Tilda xx
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Hi Tilda,
thanks so much for your concern. I think I probably have had PsA for some time too & that was the private Rheumy's view. But the unbelievably annoying thing is that on Feb 29th this year my x-rays showed good old joints, plenty of space & cartilage.
The NHS Rheumy seemed absolutely in agreement with the private Rheumy's treatment plan & it is basically full speed ahead - I'm stepping up to 22.5mg of MTX on Sunday, then 25mg 2 or 3 weeks later then Sulfasalazine then biologics if no improvement. Talking about all this took some time of course which is why the discussion about damage was so rushed and has left me with so many questions.
I absolutely hate the thought of bone erosions & holes - makes me wonder what I'm doing to myself simply by wobbling round Sainsburys! But wobble I can - don't even need a stick just now, it just hurts all the time. Knee replacements scare the hell out of me. If I was fit as a flea otherwise it might be a different story. Would love to do Tai Chi - I have done it before - but can't do all the stepping & turning.
I think I know so much. But I know nothing about this disease! That's the truth of it. I feel like I need to dissect a few cadavers and understand a whole lot more about body chemistry - that's the weekend sorted out then.
Lavender Lady posted about her holiday in Cyprus - she said she got bitten which is unusual for her but reckoned that the MTX subsequently killed the mosquitoes - some consolation? Glad the little critters aren't getting you down.
Hi Christina, I still struggle to get solid answers from my rheumy (who is great) about what to expect in the way of permanent damage, so I do think it's another of those things that is hugely variable. First started with problems with my feet towards the end of a summer, so late August/early Sept. But by the time I got diagnosed and had my first X-rays the following January I already had some damage to my toe joints. So 4 months....
The drugs have helped hugely, so feet much much better than they were, but they are now permanently damaged so mildly painful all the time, and I find that if I don't exercise I go backward rapidly and end up whimpering. But even tho' now on three DMARDS at fairly high doses I can see that other joints have slowly changed, so although it has slowed my RA it's still there munching away. Have a couple of finger joints that now are bulging with secondary arthritis, and that happened in the space of about a week! I had a normal finger, that flared badly and was all swollen, but when the inflammation swelling went away I was very surprised that over the next few days it went all knobbly. And recent MRI confirmed that it's OA. Also two vertebrae went from being ok, to being excruciating overnight... but for them I think that the cartilage was slowly reducing, but because I kept fairly fit my muscles compensated until one day the final nano-millimetre whittled away and all hell let lose. So doesn't really help answer your question, but the damage I've got did happen fairly quickly and I'm just hoping that it carries on slowing down. And I'm convinced that exercise is a good thing, not a bad one (as long as not something too violent...) Polly.
I wish rheumys would discuss / explain these things as best they can, though, or that they had time to. I can understand that it's almost impossible to predict how fast damage will occur or how widespread it will be but I'd like to be clearer about how it happens.
I don't think any more medical professionals should use the word 'quads' to me without having something coherent and helpful to say about them. Your idea about what has happened to your vertebrae makes perfect sense - there's no way of knowing if it's right (I assume) - but it does make sense & is a good argument for keeping fit.
My private Rheumy was the first person to say that I'd have an uphill struggle strengthening my quads given the size of my swollen knees. It was a relief to hear this because the exercises I'd been given weren't working & it was getting harder & more painful to do them. But his explanation of exactly why this was the case was a bit too technical for me. Now the NHS Rheumy seems to still be blaming my wasted quadriceps for everything without even mentioning inflammation etc. which doesn't seem quite right either. Not sure who to believe but I'll keep trying to build up those pesky muscles. Another version of your theory might apply to me .... maybe my cartilage wasn't great back in February but it wasn't until my muscles wasted that this became more apparent. I know x-rays aren't great for this sort of thing & I think I need an MRI .... I did ask, forcefully, but to no avail.
Like you I'm hoping that the joint destruction at least slows down. I think I could cope with my disease better with less shifting sand.
Thanks for letting me know what your experiences are, it's much appreciated & helps me get an to get an angle on things.
Christina xx
Yes I'm the same Polly - my fingers developed nobbles of OA in the first six months of RA onslaught. The rheumy dismissed these modules as wear and tear but they only arrived when RA was attacking my hands, wrists, knees and feet - bit of a coincidence? Now each of my fingers and thumbs has a pea sized bony lump on the top joints and if I squeeze one hand with the other it aches like billio.
We leave tomorrow - husband so bonded with the place and pace, climate etc and having a good friend who lives in the remote mountain village all year round has meant we have got to know all the locals and got kissed by the taverna proprietor on both cheeks and were able to communicate that she keep on eye on our friend who is great but fairly nuts! She speaks fluent Italian but tells me that its useless when dealing with her new young toy boy?! Whew I'm going to find life quite dull after this place - and dreading the cold even if the itching does stop and I can sleep in a comfy bed and get my poor skin back to normal again!
from what i can see on the net and interpritation as a nuclear engineer
it would appear that the cartlidge is made up of watter mainly so when you walk its like a sponge in reality
ie when you walk on it water goes out suppressing the 11/2 times body weight on that leg and then moving to the other weight goes off that leg and the cartlidge soaks up the water again and is ready for the next impact (hope ya following me here)
now if your not walking corectly and the cartlidge has gone then the soak up is not the same theirfore damaging the cartlidge compleatly and then going bone on bone.
some x rays you see and i dont know if you saw yours was the joint uniform thickness accross OR was it to one side the ware on the joint ie you are walking over and using only one of the cartlidges
this weares and you go onto the other and the thing happens all over again till we hit bone on bone
mine is on medial side thats the inside of your leg the wear so thats why im getting the pain in the inside of the ankle i belive cos the ankle is trying to give squarnes to the floor it has to with the knee being out . and the pain makes the body walk over off the bad one on to the better one even if that is bad the body will say he can take more load onto the better one. which in turn would take you to posture.
ask the hubby to walk in one slipper only and see what he says for a couple of mins (now thats only 1/4 inch in leg difference ask him how his body feel not only his ankle knee but his hip does the body try to keep upright alignment ie put the load at the new centre of gravity bet ya 100 quid it does.
which takes me to autho inserts they do this to try to get support in the arch which you dont really need normally to take some load and correct the knee aligment WHAT I DONT KNOW IS IN DOING THIS HOWS IT GOING TO CORRECT SOMETHING THATS ALREADY GONE IN YOUR KNEE cos you may be running on just one and a half bearing pads. ive got some other week and tried them for 1 month on and off they kill me why cos they are not made exactly for me i might not need as much to correct me alignment and they are not taking the forces that are going from my heal into my knee then into my hip then into my back.
this is the john theory but doctors dont tell you this cos they dont have a beep clue regard gravity and they should do. sir Isaac Newton has a lot to answer for with inventing gravity and the 3rd law of motion. when i get up their he is going to get a piece of my mind cos if we where in space this web site would not need to exist. lol
ask hubby tonight walk about for a couple of mins in one slipper 100 quid up for grabs
regards john
hope you get some attention soon on your problems ps im now thinking of changing docs been searching and found a new one i think will fit the bill cos he cant authorise from me letter sulfazine
ps let me know what ya think some times im right and other times im dam right lol
Thanks Minka, the way you explain how cartilage gets worn down is really helpful. I guess you are used to looking at systems and how a change in one part of a system affects other parts. And that doesn't seem to be doctors' strong point, I agree!
I can see how my funny walk has put a lot of pressure on the cartilage & how the secondary osteoarthritis can happen. But my main beef is about how quickly this happened to me. The x-rays I had at the end of last February show a nice, even joint space but only 2 & 1/2 months later the picture was very different: joint space much reduced and uneven, just as you say, and various signs of erosion. As far as I know, so much damage in so short a space of time is unusual, no matter what the pressures or how bad the inflammation.
Yes, gravity is against us in many ways - I'm thinking wrinkles but joints are so much more important!
Like you I'm prioritising getting the treatment I need so I suspect questions about this knee damage will continue to bug me for some time. Sulfasalazine is the next drug that I'm due to take, too. Go for the new doc, that's what I think, anyway.
chris i will be real interested on how sulfazine works for you as looks to me like im going that way.
im never stiff when i get up in a morning just wears on me cold feet then ankle starts then both knees start off.
just been swimming well im not as good as i used to be at it.
and looking forward to a phisio appointment when i get it that is.
then im going to say should that knee move forward like that when pressure is applied to it and i bet they say no and then i want to know how come its not showing up on the mri then.
the hands have been real good with grip but still have the red lumps like when pressed goes white then back to red again bvut they dont hurt so it apears like kenalogue only worked on me hands.
that fast erossion chris
the only thing i can think of to do that would be to have all the surfaces ruffed like emmery paper and due to no lubrication they have worn realy fast and maybe just a thought the cartlidges have gone verry weak only thing i can think of
ya a bit like me we need some wd40 from the chemist or garage make a hole in the knee a few sqirts in a morning and we are cooking on gas LOL
WHY DOES THE HUMAN BODY NOT HAVE GREASE NIPPLES LIKE A CAR.
I WILL HAVE A WORD WITH THE POWERS THAT BE ON EVOLUTION OF HUMAN BEINGS.
CHRIS another thought why dont you ask about a clean out of the worst one see what they say only in overnight.
You may be onto something, I think. Certainly my knees have always been the weakest link, loads of niggles over the years. So the joints may well have been rough or particularly badly aligned or something. Thanks for this, it really makes sense to me & gives me something to go on instead of being completely flummoxed.
The plan is for me to give Sulfasalazine a go & then get onto biologics sooner rather than later. It'll be nice if biologics aren't necessary, though. I'll be up to 25mg of Methotrexate by the time Sulfasalzine is added to the mix so not sure how I'll tell which one is doing what. But will let you know if it does seem to help.
I don't have morning stiffness either - morning weakness more like - but joints are no stiffer in the morning than they are by lunchtime. We have related forms of inflammatory arthritis, don't we?
I've found myself looking longingly at cans of WD40 too! If only!
I did notice my thumb joint doing some very strange things over the course of one evening - but I think that was more bulging cartilidge than permanent damage.
I also had something similar with my foot in that the initial X-ray seemed fine but then a couple of months later when MTX was working but my foot was still unbearable, the X-ray showed damage. I think this is slightly different though as the bones and things in the foot are much smaller and so changes in the margins and existing issues are much more difficult to spot.
As you say, shifting sands, you just come to terms with one set of changes and then have to re-adjust again... I find as long as I don't use my foot, avoid people with diseases, don't get too stressed or tired then I'm fine - desert island for me then! (as long as I sit in the shade so the sun doesn't affect my skin of course)
Well you'd think knee joint x-rays were much easier to interpret than those of feet but nonetheless the Rheumys don't seem to agree about mine. I was a little heartened by the 'I had ...' bit of your post which might suggest that it was a one off?? I expect that you, like me, worried that other joints might go down the pan in rapid succession?
Last bit made me laugh - my definition of 'fine' has changed somewhat too!
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Has anyone tried using diet to put their RA into remission? Any success? 
Letter from consultant arrived 6 months late !!
Discombobulated
