Impending knee replacement

[Esradral]

I finally had one knee replacement in Sept 2024 and now await my other knee. Last week I had a rare doc appt to discusss the neuropathy in my feet and hot swollen hands and deformed fingers. But the doc had different ideas and insisted on talking about my steroids for PMR and how I should reduce them. I explained I was there to discuss my hands and feet to which he held up his hand to stop me dead and say "that will be the fibromyalgia." Astounded I told him I was due to have another operation soon and did not want to compromise the situation by reducing by1mg from 8 to 7.

I have been stuck on 8mg for quite some time waiting for these operations to get me out of a wheelchair and back on my feet after a 3 and a half year wait. I have read all recommended info and did not want to enter into the danger zone of possible adrenal crisis, again when mentioning this to my doc he said "who told you this?"

When I explained that all of my knowledge regarding PMR has been from this site he said it was "rubbish and never heard of it." I came out of there totally bamboozled, frustrated, upset and feeling actually bullied. My concern is this, he will be altering my prescription from 8 to 7mg and there is nothing I can do about it. The last time a doc had any input was when I was initially diagnosed in Aug 2021 put on 15mg, felt much better the next day then reduced 5mg at a time to 10mg only for it to reignite and have been left to my own devices since. My question is this, what do I do to stay safe on 8mg for a little longer until my other operation is over with.? The last op caused a flare straight through my shoulders a day later and the ward doc doubled my dose which seemed to nip it in the bud. I am at my wits end and actually quite frightened. Please advise.

[HeronNS]

Do you have a chance to talk to the surgeon or the anaesthetist ahead of the procedure? They can and probably will help you out as the last thing they'll want is for you to do badly because your body will not be able to make any extra cortisol needed for coping with stress of the operation. If they are able to send a recommendation to your GP that your dosage not be tapered too soon after the operation it may buy you some time to find a more knowledgable primary care provider, or another way to get enough pred to manage with. 🍀

[Griggser]

uninformed GP’s the bane of our lives.

Hand him this next time and point out what the guidance is that he should be following if you have an operation coming up.

kch.nhs.uk/wp-content/uploa...

Reading you're story made me so angry

[DorsetLady PMRGCAuk volunteer]

As stated, you do need to discuss with surgeon, and probably more importantly the anaesthetist… before your operation. But in my opinion, no reducing beforehand.

I’d also suggest a better informed GP .. and for future reference it’s always best to say you got information from the charity [which you did as this forum in part of that and moderated by them]. If you just stay “off a forum or off the internet” -you are likely to get that sort of response from some.

If they still get sniffy about it, you can advise them they can become member of the PMRGCAuk charity free as a professional member. Even though some may not appear that professional 😊

Maybe send this to the surgery -

pmrgca.org.uk/professionals/

Best of luck for your replacement.

[posthinking01]

This is awful - there would appear to be a national guideline to get ‘people’ off steroids - when you had your operation do they give you extra steroids to compensate for the adrenal response needed ! I have adrenal insufficiency and they tried to do the same to me !

[PMRpro Ambassador]

You WILL get steroid cover during the operation so there is no need to worry about that, where the concern is will be whether you flare in response to the poking at your body which IS quite possible but not inevitable. It is the anaesthetist - not anyone else - who is responsible for keeping you alive so they are the person with whom to discuss your concerns.

When you say "a doc appointment" - what variety? A GP, a rheumy or who?

[Freya32]

Oh you poor lambTake the 7 MG PRED they want you too and then see how you feel maybe

Then every six weeks reduce one milligram only. See how you feel.

Go slowly in rest if you need,

Fibromyalgia?..

Hard to diagnose.

Let's assume you just have PMR.

The anaesthetist at your pre op appointment will discuss it all with you..or someone will.

Do not stop preds suddenly.. do not run out of them.

I have not had my knees done yet but too late now,.had L shoulder done about 2017 . BRILLIANT never a scrap of pain aftewards. Hip done same year and not so good.

Need left shoulder done...too late now. Been on waiting list for L hip. . That won't be done.

I was on 2mg to 4 mg predsmg .still on 4 Started on 15 mg when crippled. In 2021/ 22 First dose was magical Nov 22. Went to Rheumatologist twice... waste of time ., his and mine, He didn't tell me anything I didn't know.

... My hands were terrible , unusable. But slowly improved. Not as they were . Old nerves do not recover so well. Cannot peel an apple.

You need to let yourself be your guide.

Re the op on knee.

Aslong as your heart is OK. You will be fine.

You need a frame to walk with after for about six weeks. Hosp will provide one,

You get painkillers afterwards as long as needed.

Good luck with it.

I expect you have already had a lot of replies from the experts on here..

[Lassie2]

I suggest you speak to your surgeon to get advice from him .You didn’t mention when you were getting the other knee replacement but most surgeons seem to be happy as long as you are between 5 & 10mg when you go in for the op. They will not want you to reduce at the time of the operation .