PMR & Osteoarthritis in Knees

[jules1955]

I have been added to the waiting list for knee replacement. I am trying to loose weight which I feel will help the pain in my knees. They can be very stiff some days and difficult to bend and I do get pain in the back of my thighs and shin splint pain too. I wonder if this is part of PMR ? I would hate to have the operation and it make no difference. I am also terrified of having the operation, as it looks so brutal. Has any of you PMR people had knee replacement because of Osteoarthritis ?

[DorsetLady PMRGCAuk volunteer]

I’ve have knee replacement as well as hip and shoulder - see this for info -

healthunlocked.com/pmrgcauk....

If both knees/legs are affected then it might be partly PMR - do both knees need replacing or just the one?

[jules1955 in reply to DorsetLady]

Thanks DorsetLady, I am in early stages and only had one Xray so far - just waiting to hear from hospital - which might take a while xx

[PMRpro Ambassador]

I was told I had OA some 17 years ago by a rheumy who could "feel"it. 13 years later there was nothing to see on an x-ray. It had been PMR that had caused my knee pain and it disappeared immediately with pred.

They really aren't in the habit of offering TKRs for nothing though! If they say you need it, you almost certainly do.

[jules1955 in reply to PMRpro]

Thanks PMRpro always good advice x

[Miserere]

I am due to have a TKR soon and, like you, I am dreading it ... but also looking forward to it as I hope it may mean the end of the extreme pain and stiffness that I have at the moment. You must have had x-rays - so that would indicate whether you need it done. The surgeon said that there are virtually no gaps left where my cartilage should be in either knee and there's nothing behind the kneecap which is why I can no longer wear supports without serious pain. One hurts and the other doesn't hurt as much. He's planning to do both (not at the same time, though! I don't think I could face that). I will see how the first one goes and then decide.

I use flexiseq but am allergic to paracetamol and don't want to take ibuprofen with Pred, so am a bit stuck on the painkilling front. However, looking on the bright side, although I am expecting pain afterwards at least it should gradually start to diminish - at least, that's what I hope and that's what others have said - many have said it's the best thing they've ever had done. I cling on to that as I don't really want to even think about the surgery itself. I have elected for a spinal anaesthetic as I don't want a general - I have a weird fear of not waking up.

Good luck with it - I am still waiting for a date but have been through the pre-op assessment and the sign off so should not be too far away. Would love to see how you get on.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Not going to say it’s easy, no operation or replacement is, but it’s not as bad as you may fear.

Do as much pre-op exercise as you can (not easy I know) and again afterwards-the first couple of weeks are the most difficult- but as you say -it’s got to be better than now.

I had my knee done in 2017 - and tbh I rarely even think about it now…

Good luck when the time comes

[Miserere in reply to DorsetLady]

Thank you, DL! I know I need it done on the left knee but the right one also looks a mess so he has decided to do that one afterwards. I shall wait and see how the first one goes as the other is not as painful - but it won't go upstairs on its own without the other one to power it, so I doubt it will be much help in recovery.

What is the best way to find out about one's surgeon? I can't find anything about mine online as he is new to our Trust. I'm sure he is fine and certainly a very nice gentleman but I'd love to just try and find out what he has done before.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Do you mean you cannot find out anything on the trust’s website or generally online? I’m sure he’s lurking somewhere….maybe start here - but it may depend on how much info you have on him…

rcseng.ac.uk/patient-care/s...

Could ask PALS at your local trust?

[Miserere in reply to DorsetLady]

Well, he is not listed on your link. I shall look up PALS and see if I can find out anything that way. I only have his name - I know nothing else about him.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Worth a try ….

[PMRpro Ambassador in reply to Miserere]

Trust sites tend to be a bit slow to update and don't always say much about the hisotry. If he has published, got much of a reputation then possibly LinkedIn if he has enough of an ego to join it!

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Just to add... when I had my knee replaced I'd seen surgeon in November and told him and had written a letter to go on file to say I would be in New Zealand for 3 months - left about a week after appointment... so could they bear that in mind and contact me by email, and not book operation during that period.

Needless to say when I got home home I had 3 letters from appointment team advising operation request received, reminding me and then cancelling because I hadn't answered... I was a tad cross to put it mildly - so explained that I'd told everybody I thought I should that I'd be away. They said "we don't see file, just get a request from secretary to book you in" - so I went back on list..fortunately not to the bottom...

Come the day of the operation, a completely different surgeon turned up and did the operation - never seen him before, nor after - think he was on secondment from another hospital - but it was very successful so no complaints..

So I'm sure your man knows what he's doing..

[Miserere in reply to DorsetLady]

Oh, wow! I'm sure you are right - he will be fine. He seems very pleasant, anyway.

[HeronNS in reply to Miserere]

To help with walking so that you can get a bit more exercise to strengthen the supporting muscles, you could consider urban poles. They are a bit like nordic poles, but instead of being used to help swing the arms along and walk faster, they have a ledge below the hands which you use to offload a bit of your weight to, and actually use the poles to ease the weight on each leg as you walk along. A bit hard to describe, so I'll include a video. With Nordic walking the poles are always slightly behind the feet and are not used to offload weight. With urban poling the poles move beside the feet and are actively used to offload weight to the arms.

My experience with these was to help with a pair of (separate) knee injuries I sustained a couple of years ago and found them very useful indeed as I really wasn't able to walk far without them, but not so bad as to need crutches or a walker (aka rollator I think?).

youtube.com/watch?v=qjvk0X0...(Not working as expected?)

[Miserere in reply to HeronNS]

Thank you for this!! These look really good - I will investigate!

[HeronNS in reply to Miserere]

I had to do several things to recover from the injuries, symptoms of which which both doctor and physiotherapist said could be attributed to osteoarthritis, which I do have. But I knew I had hurt myself and eventually had to change my behaviour before I could get better. But among other things which might help you both before and after surgery (along with guidance from the medical people) is using a good quality pedal exerciser which works differently from a stationary bike. Again I think the benefit is it helps improve muscle tone without actually stressing the joints. Ask your doctor or a physiotherapist first if they think this might benefit you.

If you google "TODO Mini Exercise Bike Pedal Exerciser with LCD Monitor for Leg and Arm Recovery" you can see the type I bought.

[Miserere in reply to HeronNS]

These look interesting as well - I shall ask and investigate further.

[jules1955 in reply to HeronNS]

Thank you HeronNS I have actually just bought some of these x

[Cat33 in reply to Miserere]

I agree with DorsetLady it's not as bad as you fear I had my left one replaced in 2021 and so glad I did and I'm on the list for my right one

Just don't rush it after the op you will get there and you will feel great

Wishing you all the very best

[Miserere in reply to Cat33]

Thanks so much - that sounds reassuring. They've told it can take 18 months to 2 years for the knee to settle down and then it will never feel like quite my own, so that's why I'm a bit nervous I suppose. However, the pain in the left one is too severe not to do something! If it eases that, it will be enough.

[Cat33 in reply to Miserere]

People love to tell you horror stories .I agree it takes a while to settle but it's not awful I promise The feeling of it not being your own goes Also you might get numbness in your knee but it does come back Just take it one day at a time and it's great to see the progress you make

I remember the physios wanted me to raise my leg after my op well it was like it was glued to the bed I couldn't move it Got home and woosh up it went 😂So don't listen to any stories

To be without the pain will be a new lease of life for you

[Miserere in reply to Cat33]

You are very encouraging, Cat33 - thank you!

[Cat33 in reply to Miserere]

I know exactly what you are going through and how nervous I was before my op I have a lovely neighbour who has had both her knees replaced and that's who I listened to With all her advice she was spot on and always positive

[Miserere in reply to Cat33]

Well, everyone here has helped me no end - thanks for the encouragement - very much appreciated.

[Cat33 in reply to Miserere]

Yes I have read the responses from everyone and it's so lovely that they are all so encouraging I've found the forums have really helped me over the years x

[jules1955 in reply to Cat33]

Thank you xx

[jules1955 in reply to Cat33]

Thank you xx

[jules1955 in reply to Cat33]

Thank you xx

[jules1955 in reply to Miserere]

Thank you for your reply _ sorry its late I was travelling all day yesterday. I have only had one Xray to diagnose my OA in my knees. My left knee is worse than right knee - but I get more pain from right knee. It seems to have crept up on me quickly. started with pains prior to Pandemic and has got progressively worse, but I do sometimes think is some of this pain due to PMR. I don't expect the surgery to happen quickly - but I will let you know my progress and we can compare notes. Good luck !

[Miserere in reply to jules1955]

That would be great, jules1955. We are the same age as well, I think. I had no pain in my left knee until the same time that I developed PMR - so that is strange - and both reared their ugly heads after the vaccine. However, that is probably coincidence. Do let me know how you get on. Best wishes and best of luck.

[Bcol]

Had mine done in 1999 and still going strong. Best thing that ever happened. As DL says do try and do as much as you can with exercise before the operation. Yes, it's a major operation but so worth the outcome. Continue with all the exercising afterwards, even when you don't feel like it, and then learn to trust the knee, it's not going to give way, it's not going to give you continual pain, and treat it pretty much normally. Best of luck and keep us informed of progress.

[Miserere in reply to Bcol]

I'm sure it will be a blessing as I am finding it hard to get around now at all, so I can't wait but also nervous. I get on the exercise bike daily, with resistance, and I do a good session on the exercises so I am doing everything I can, I think. Good to hear yours is still going strong. Is it taking its weight and doing as much as the other knee?

[Miserere in reply to Bcol]

Thank you, Bcol!

[jules1955 in reply to Bcol]

Thank you xx

[DAW28]

I have had one knee replaced. The best thing you can do to help yourself is do the exercises recommend before the op as much as you are able to bear as it will help you post op. Good luck with the operation.

[Miserere in reply to DAW28]

Thank you!! I shall persevere with the exercise as much as I can.

[jules1955 in reply to DAW28]

Thank you xx

[jules1955 in reply to DAW28]

Thank you x

[Noideas]

I had a partial knee replacement almost 2 years ago. Unable to face a 4 year wait with bone on bone pain I went to Nordorthopaedics in Lithuania. It was an amazing experience with a top surgeon, excellent care from lovely nurses and then 8 days of physio and other treatments at a medical spa. There is nothing like it available here. No going home after 2 days with a bit of paper with exercises. I spent my working life in the NHS I strongly support it but this was a different level. Yes I had to pay and I'm lucky to be able to do that but much less than private in the UK. Got my life back until pmr came along!

[Miserere in reply to Noideas]

I don't blame you for going - sounds amazing. I felt fine with everything until PMR came along and that was triggered by the vaccine. Never felt the same since. Onward and upward, though! Have to keep going. I take it you don't suffer with the knee at all now?

[jules1955 in reply to Noideas]

Thank you xx

[marionofnorwich]

I feel the same as you jules1955 Although the Xray shows wear and tear, I am not convinced it needs a replacement as it seems to be slowly improving rather than getting worse. I haven't seen an orthopaedic surgeon yet but I guess I want some one to tell me a) it can get better given time or b) it will never get better and you will end up with a TKR eventually, then I would know to bite the bullet and just go for it, or work on other improvements

[jules1955 in reply to marionofnorwich]

Thank you for your reply, I am in early stages and waiting to hear from hospital xx

[jules1955]

Thank you to all who have commented - I was travelling all day yesterday so I'm sorry I have not replied to all as yet - but I am holiday now so I will get around to all soon. It is comforting to have so many positives about the surgery, so again thank you !!

[Musicmaid]

Hi Jules,yes I had total knee replacement in 2016 and have had no problems since. I did lose weight before the op and did exercises to strengthen the muscles above my knees. It is painful but the staff were very helpful re pain relief. I must stress that post operation I was religious about the exercises that came with the Book I was given on discharge. I obviously can’t kneel down anymore but I don’t find that too much of a problem. Good luck to you and go for it!

[jules1955 in reply to Musicmaid]

Thank you for your reply, the worst time for me is getting out of bed in the morning, both knees very stiff and painful, then once I get going it eases, then gets worse if I walk or sit too long. I haven't been able to kneel down for years - its just too painful.