Am a 58 year old guy and five years on from my RA diagnosis it became evident that my left knee had deterioration to bone on bone Osteoarthritis. My RA is under control sun Amgevita and Methotrexate
I also have blood pressure and take bisoprolol.
I saw the NHS consultant in May and he said it’s bone on bone but am not displaying end stage symptoms all the time and am too young for replacement. Was told to go off lose weight, swim etc and come back if things get worse.
Well I can’t swim let alone cycle and am on cocodamol daily to get by and still am struggling if anything getting worse plus now am getting Achilles tendinitis and a sore hip because walking is hard and am over compensating.
How bad do I have to get before am considered for knee replacement? I m getting to the end of my tether.
Paul
Written by
TheBoys
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I can’t answer your question because that’s up to the medical profession. But just because you can’t swim doesn’t mean you can’t go in the water to exercise. If you live in the UK your doctor should, through the surgery’s social prescribing team, be able to refer you through to something suitable. If they can’t, then have a look at the website of Arthritis Action for help.
Unfortunately since the covid pandemic, the waiting lists have escalated-they were pretty bad before, but now really dire.
Not sure you are too young for replacement-but if that’s the consultant’s opinion you are a bit stuck - does his department not have access to pain clinic or physio that could help with strengthening the muscles in your leg to make things a bit easier. Did he offer steroid injections or have things got too bad for that?
Have every sympathy -been there with knee and hip - but replaced pre Covid luckily. …and left knee deteriorating did lead to right hip!
PS - it might be worth trying flexiseq although have to say it maybe not as effective as it could be -needs some cartilage/ synovial fluid in knee to work on. Depends how desperate you are to try - but they do sometimes have informative articles on webpage
Fwiw I have a diagnosis of severe arthritis in one of my knees (both are arthritic, OA) and Flexiseq has worked very well. It meant I didn;t have to proceed with getting a knee replacement although I can call the orthopod directly and don;t need a referral. Doubt it's bone on bone, however, and I am on the thin side. I sometimes wonder if it would have become bone on bone without the flexiseq!
A couple of months ago one of my fingers became very inflamed and swollen and I found that Flexiseq very quickly calmed the inflammation and stopped further joint enlargement. I feel sad looking at how my fingers have become distorted over the past few years, but I can use them without pain, thanks to Flexiseq.
I know your pain!!. I've got erosive, my fingers point/bend every which way but north. It has progressed from nothing to where I am now in 6 yrs. In January I went to see a consultant, who immediately said, bone fusion. I've been using flexiseq which she recommended, had steroid injections in March, my fingers do still lock but not as bad, I'm avoiding having fusion for as long as possible x
have you tried a stationery bike for exercise. Many years ago this was suggested by my physio and really seems to have helped to keep my knees OA from getting worse. No or lowest gear and work up to 40mins a day.
TheBoys And just to add to that, a good quality pedal exerciser can also help. It works differently from a stationary bike, with less stress on the actual knee, to strengthen supporting muscles. Maybe better to start? Can you see a physiotherapist to find out what would be best for you at this time?
Hi DL, think I'll give Fleiseq a try. Do you think taking Pred. for 12 years, even small doses, has affected my knee? O/S says he would put me forward for a replacement but I'm not too sure about it. I can walk 3/4000 steps without the pain coming and have walked the Pigrims Path at Lindisfarne and ended the day doing 20000 steps with a slight limp. But when the pain comes it is like the worst toothache in the knee and radiates to the shin and hip. Just on my second visit to Physio so will see how that goes. you seem to have gone through the mill. Do you think PMR was the culprit?
Didn’t have PMR -had GCA (head area) and not sure that Pred affected my OA either -already had it in knee and shoulder beforehand -and it’s a familial trait. Sister ended up in wheelchair -fortunately I haven’t.
However being on Pred for over 4 years (high doses early days) certainly masked the pain, so it may have deteriorate more than I realised…and I think the hip was affected by compensating for original knee…
Fingers crossed other joints okay thanks to flexiseq and Pilates. ..and generally being more active following replacements.
Hi I am in a similar position. I have found acupunture pens from amazon helpful, they give a little electric shock in your acu points. I have also lost four and a half stone in weight with overeaters anonymous. I am unable to swim but go to the pool twice a week and move around in the water. I am also unable to cycle. I have also been doing an course of exercise online called 'escape pain' it is designed for joint pain and you do it twice a week. The problem with codiene is that your body easily gets used to it and you need more and more for the same effect so I try not to take unless I have a really bad flare. There is a charity called verse arthritis that may advise re dealing with doctors. It might be that you are entitled to a second opinion. Have you been offerred an injection in your knee yet?. I have had two and they worked wonders although they dont work for everyone.
I'm so sorry to hear that Paul. I am in a similar situation I'm 42 and quite overweight so was told to just go lose weight. OK that's fine I'm doing that as I went for weightloss surgery in Feb and have lost 5.5stones already. But that is not going to take the pain away because my joints like yours are already damaged. These doctors need to actually treat the pain and not just send us patients away with blanket statements like that just because of age. It's not fair as the quality of life we have is not what we want it to be. I feel your pain Paul but is it possible to go get a 2nd opinion?
Thanks for this. I’m now seeing a second dr on Monday morning. It really has been a bad couple of years abd finally got my RA sorted only for the knee to present like this.
I ll see what he says Monday but something needs to happen. tnx!
Hi I had total knee replacement,when I was 50yrs old so don't know why they said your to young possibly because,it only lasts 10yrs,and don't want to spend the money,but id certainly go back and make them listen!!!
It also depends how you use the joint afterwards. My cousin had an ankle replacement - had to wait years because of the "too young" bit. She was under 50. But once she was in a wheelchair they relented. She has always limited the amount of walking she does, takes advantage of wheelchairs etc., at airports for example, and gets most of her exercise from swimming. She is about two years younger than me, so would have had her op around age 50 and is now about 74.
So no marathon running for you and you may have to keep weight down and find other ways to maintain bone and muscle health, but it definitely can be done! But it would be great if you can defer the op and still have a decent QoL.
Over the past few years I've found trying to keep healthy is becoming like a fulltime job, but I suppose it's better than the alternatives.
Can I ask if your cousin still has the original ankle replacement or has she had a second one now? I have ankle arthritis, fortunately tolerable enough at the moment but I know surgery may be necessary at some point and general opinion is that the replacements last about ten years.
Unless she had one in the past couple of years and didn't tell me, still the original.
I don't see her because we live on different continents and neither of us, but particularly she, are not the best correspondents. When she visited in 2019 she was still getting around very well and still careful to limit her walking.
One reason she's always been so careful is because when it was done she'd been told it was not possible to redo an ankle replacement. When she finally had one, still earlier than the doctors wanted to do it I think, she said she hoped by the time it needed to be replaced they'd have figured out how to do it!
Hi, I was 48 when I had my first total knee replacement.
At first, like you, I was told I was too young, but a diagnosis of lupus changed everybody's opinion. It should be the same criteria for RA.
It used to be that replacement joints were considered to have a life of 10 to 15 years, depending on how you look after them. Obviously marathon running or tap dancing would be a no no!
I have now had my knee for over 20 years and it is still going strong. I accepted the risk that I may have to have a revision at some point, but it is not needed yet.
In fact I have had the other knee and both hips replaced over that time.
My surgeon told me that technology and engineering have vastly improved the longevity of replacement joints over the past few years and his theory was quality of life was important.
My feeling is there is probably a very long waiting list in your area, and to add you to it may be to give you false hope, especially if it is going to be 3 or 4 years. It is his way of putting the onus on you doing as you are told before he will consider it, which will hopefully and eventually happen when the waiting list is reduced.
I know there is a tick list, first, lose weight, second, physio, third, arthroscopy and/or steroid injections, finally you are on the replacement waiting list. It all takes time.
I know of a lady who was told the same but was not prepared to wait. She used all her savings to have the op done privately. She did lose a little weight, really so that her recovery would be better, but she did not have to jump through the hoops the NHS put you through. She said it was money well spent, she has her life back.
I realise not everyone can do this, especially in the current financial situation. But it just goes to show it is a 2 tier system, which has nothing to do with how urgent the situation is.
I would definitely seek another opinion, if that fails, try to get your gp onside to insist on the urgency of your op.
Not entirely sure but has your consultant mentioned to you that short term there may be a product out there which may help. I suffer with E.A., and like yourself my uppermost finger joints are now bone on bone. I have received steroid injections to help stop my fingers locking, I'm hypermobile to!. They did try to inject steroid into my most affected joints, without success, as there isn't enough space there due to the erosion. My consultant recommended Flexiseq Max Gel. Not available on script unfortunately, it's not cheap when compared to Voltarol etc. It's not a painkiller, not sure exactly how it works but using a pea sized amount and massaging gently all over my hands does offer some form of relief from the pain. Your all to familiar with the morning stiffness, let's just say that within 30mins of application it allows me more movement within the joint before I feel the pain, and when I do feel the pain it's significantly decreased. I cannot take the normal pain relief of codeine, tramadol makes me sick and I'm allergic to morphine. As an avid coffee drinker I have implemented the use of CBD infused coffee, you can also get cbd tea or hot chocolate, since using I have noted that the inflammation has decreased, would suggest giving it a try. The flexiseq is available via Amazon, its actually cheaper on there as most chemists do not stock this. Hope this may help. I'm trying to avoid having my fingers fused until there is no other option. Good luck x
Glad to hear that. Other than my Flexiseq and cbd coffee, I'm in total limbo regarding pain relief. Will now see what happens in 12months time regarding steroid injections. I've already got 2 dislocated fingers due to the erosion and all my other fingers point east or west, except my thumbs, which aren't affected. Dont ask me to point you in the right direction, you'll end up totally lost, ha ha!!. Good luck x
They have been telling me that I am to young since I was 28 wait until you are 50 I'm now nearly 60 when I got to 50 it was because I was over weight which I have lost now. I now have arthritis in both knees right ankle and hip both shoulders and hands and to top it off its now in my spine and neck. All due to a motorbike accident when I was 17,the problem now is I also have lipoedema and lymphoedema in my legs I had a minor stroke just after they removed part of my lung. So they have a whole host of reasons why I can't have a replacement of knees hip ankle or shoulders just depends on the Dr I see but I am going to try some of the fexiceq I have never heard of it before. I am on fentanyl oramorph and gabapentin and a very good GP good luck
Such BS is the “too young for a replacement” and must be a British/European thing as I’ve not heard near as many of these dreadful “explanations” from US docs….if the knee is destroyed how much “older” does one have to be to get it fixed….the simple fact is that people like me with early onset OA or anyone needing a total knee needs it ASAP as a knee that is destroyed will not get better it will only get worse…what BS!
100% agree, they put the replacement off because they might need doing again in 15-20 years time but what about the quality of life now? I have awful, chronic knee pain but I have been told I am too young for a replacement. They give me pain killers, cortisone injections etc and in the meantime I have lost my job, I’m on benefits, doctors won’t sign off an early pension request to my company because they say the condition is not permanent and because when I have a knee replacement the osteoarthritis should be OK, however there’s no commitment as to when it will be done. It’s so frustrating, I am going days without leaving the house, sometimes it’s difficult to walk down the stairs so I stay in bed.
My GP said they prefer me to be over 60 but this blanket policy is ruining peoples lives and who can guarantee we will be around in 15-20 years time when they expect it to be done again? My father in law had 2 replacements 20 years ago and both are still working fine.
I had my first TKA in 2004 at age 36…doc called me after the MRI and said I needed the TKA as soon as possible or I might risk a knee fusion that would pin the knee in place with no bend so I’d walk with that leg stiff the rest of my life…I told the doc I was too young..lol! Had the TKA done 2 weeks later. If the knee has severe OA (or any other joint destroying condition) and the joint is trashed, wether that happens at 36 as it did for me or at 70 when many others have a TKA I don’t believe AGE should matter, only joint function, the state of the destruction of the joint, tge amount of pain etc…Oh and blaming “implant expected lifespan” for not replacing knees in young people is a smokescreen by your doc…most QUALITY implants last 25/30 years…heck my left knee is 20 years old and no loosening, or excessive wear on the plastic “functional” parts that make it work…so I’m at “lifespan” according to your doc…and on X-ray or MRI it looks as good as 2 weeks post-op. Finally, if your doctor used one of the several 5/6 quality knees available now, the lifespan on most of those top-quality precision engineered knees is 30 years anyway…I think he’s just using the “lifespan” reason to cover up the real reason because it sounds logical to younger patients and stops any counter arguments from younger patients, as there is no comeback or arguing with wanting a TKA now then planning on another “revision TKA” in 20 years which is a longer, more painful and less associated with good outcomes then the initial TKA…but plenty of companies make a 30 year knee now… best of luck to you Wolf, I would have a fit if I were in your shoes…when you can’t sleep more then an hour or two, can’t walk, hurt bad 25/7 etc…and you know I s time to get the TKA to be told “Nope too young implant only last 20 years, go do some exercises and I’ll see ya when you are 60,” would have led to some fireworks and me getting fired as a patient because I told the doc he was stupid and fix it loudly…lol! Anyway…I hope you can either get the TKA, or have an unexplained remission of the severe pain because it is really a life changer when
Brilliant information thank you so much, do you know the name of the good quality knees or the inferior ones to avoid? Perhaps they have been using poor quality knees and that’s why they seem to have had this policy lately of putting people off? Thank you again for the information
JNJ, Striker and Wright Medical…My 2003 knee is the Wright medical Advance which is was at the time the most advanced knee on the market…it is a medial pivot system and mine is “cemented” not cementless… not to get too much “in the weeds” about techniques of TKA but these work best in younger patients who put more demands on the knee…several studies have shown this and I’ll link one for you…you can go to PubMed.gov and type in “medial pivot TKA and read all night…my best to you!
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