Hi everybody, I am new to this forum: I have... - PMRGCAuk

PMRGCAuk

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Hi everybody, I am new to this forum

Dolcelatte profile image
14 Replies

I have followed your posts for a short while and I am grateful for the comments and advice you constantly give.

I was diagnosed with PMR and GCA 2 years ago. My profile explains my experience with this illness and relapses. I am now on 9mg Prednisolone, tapering 1mg per month.

About one month after my 3rd covid vaccination in October , my knees started to ache so badly, that I find it very painful to walk or stand. An X-ray to one knee showed osteoarthritis. Four months on, pain is persistent. GP said that the only way forward, apart from exercise, would be cortisone injections in the knees.

Has anybody any experience of this and how long does the effect last? Thanks for any advice.

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Dolcelatte profile image
Dolcelatte
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PMRpro profile image
PMRproAmbassador

Hi and welcome now you have peeped round the door!

webmd.com/osteoarthritis/co....

I think if it were me, I would want to see a knee specialist before going down that road. A cortisone shot to reduce pain and inflammation after an injury is one thing and can work very well but if the knee cartilage is already in a poor state, a cortisone injection may accelerate the deterioration - and when it is gone, as the saying goes, it is gone. Bone on bone is excruciating.

How long do they last? Depends, sometimes one shot achieves the required relief and that's it - but that is with acute injuries. You shouldn't have too many, 3 a year is the usual maximum, as they do have adverse effects too.

everydayhealth.com/osteoart...

At best they can really only delay a joint replacement - getting on the list now might be a good idea!

Dolcelatte profile image
Dolcelatte in reply to PMRpro

Thank you so much for your prompt reply! I do value your input a lot.I read the information about the cortisone injections and I am not so keen to have them now.

The knee replacement is the ultimate choice. Should I ask for a referral to an orthopaedic surgeon specialising in knees?

I also read that TENS (transcutaneous electric nerve stimulation) does not seem to be effective. As I just bought a circulation booster and pads, I think I will have a go to see if it helps.

I also bought FlexiSeq which you suggested in one of your posts and it seems to help marginally.

Nextoneplease profile image
Nextoneplease in reply to Dolcelatte

Hello 😊

I’d say yes, definitely ask for a referral to orthopaedics. My GP refused to refer me for ages until I saw a physio who wrote to him saying there was nothing more to be done, a knee replacement was the only option. I dreaded it frankly, but honestly it’s proved to be the best thing I’ve ever done. Dealt with the pain and immobility nearly 100% 👍

Not saying you definitely need joint replacement of course - but I do think you need a specialist opinion.

By the way, in the run (😂) up to this, I had a cortisone injection in my knee - the blessed relief lasted a couple of weeks, tops. As PMRpro says, it can’t deal with bone on bone pain.

Take care and all the best xx

Dolcelatte profile image
Dolcelatte in reply to Nextoneplease

Thanks to you and DorsetLady for your helpful suggestions. I need to contact my GP for a referral to orthopaedics. Fingers crossed!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Dolcelatte

I had knee OA long before GCA (manageable at that time, pains obviously masked at higher doses but resurfacing at around 10mg, and increasing painful as I reduced to zero Pred.

I had cortisone injections for a couple of years, you cannot have more than 3 in a 12 month period.

How long they last can vary from a couple of weeks to months…..depends on how good the doctor is in getting exactly the right place and how severe your OA is.

Does your local hospital have a musculoskeletal clinic? If so, get your GP to refer you, they will look at your x-ray and decide a course of action.

With mine, they decided knee was too far gone for physio etc and fast tracked me straight to surgeon …..mind it was pre Covid.

But as PMRpro says - you need to “get in the system” asap!

PMRpro profile image
PMRproAmbassador in reply to Dolcelatte

TENS does appear to work for knee OA

pubmed.ncbi.nlm.nih.gov/265....

but it isn't something that magically means you don't need a joint replacement - just to keep you going in the meantime for pain management which has fewer adverse effects than painkillers.

GPs are supposed to be gatekeepers - but the gate is meant to be open for the specialist to decide things that are their realm. Even experts say they can look at a knee that appears fine on the x-ray but the patient is immobile with pain while someone with a car-crash of a knee is still able to walk. That is the decision of the specialist on the basis of imaging - a rheumy once informed me I had OA, she could "feel it". Thirteen years later x-rays showed there was no sign of OA there at all - it had been PMR. My daughter was being sent for physio repeatedly for a subluxating knee - the specialist said she could have done physio every day for the rest of her life, it would have achieved nothing! Surgery stopped it though!

Maisie1958 profile image
Maisie1958

Hi and welcome, no advice but after my flu jab in 2020 both knees became extremely stiff and painful with hips joining in briefly. My PMR at the time had been well controlled. No response to paracetamol/nsaids. Phone consultation with GP- wear and tear. Lots of investigation via private rheumie- MRI of one knee did show mild OA but by this time I could hardly walk and was feeling dreadful. Diagnosed with seronegative inflammatory arthritis with polymyalgic onset- now on MTX and on 0.5mg Pred and feeling good- not a twinge in my knees. Not saying you are similar, especially as you were diagnosed with GCA but it was just the fact both of your knees flared up after a vaccine? Could you see your previous rheumatologist again for their opinion? All the best.

Dolcelatte profile image
Dolcelatte in reply to Maisie1958

Thanks Maisie 1958 !It seems similar to what happened to me. Painkillers do not seem to help and just upset my stomach, so I stay away from them. If at some stage my pain disappeared it would be a miracle, but how and when, still a mystery. All this needs further investigation.And to the lovely people who replied to me, thank you so much for your help. It makes me feel protected.

piglette profile image
piglette

I have problems with just one knee which is due to osteo arthritis. There are some really good exercises that can help before you think about a knee replacement. I actually have PRP injections. They are quite pricey. The NHS have been talking about paying for them, but don’t hold your breath. Platelet-rich Plasma (PRP) injections are a type of orthobiologic therapy that involve taking a patient's own blood and concentrating the levels of platelets and growth factors to promote healing in injured musculoskeletal tissue. They reckon they can put off a knee replacement for eight years. I am not sure how true that is though but they work for me!

powerwalk profile image
powerwalk in reply to piglette

Piglet, who does that, PRP, is it a Rheumy or an Orthapaedic guy? Tks.

piglette profile image
piglette in reply to powerwalk

I just get it done by a private GP.

powerwalk profile image
powerwalk in reply to piglette

Oh right, thank you.

powerwalk profile image
powerwalk

I had two lots of injections in my right knee. About 3 months apart. The first lot worked well, the second lot did absolutely nothing. Sometimes its hit and miss with these injections, i know from previous neck injections! Good luck, i hope you get some relief.

pegpowell profile image
pegpowell

My knees became swollen in my 70s after climbing Humbug Mt, and had to be drained and steroid shots received by an orthopedic surgeon. PMR had begun to emerge but not diagnosed. A year after PMR diagnose one damaged knee was replaced in 2017after maintaining pain with shots and a wrap. The other knee has been fine in spite of arthritis as it is the hip that is worse and now needs replacement.

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