rheumatologist recommendation

[Beans-and-Buns]

Hi. I know it’s a bit of a long shot but I live in the UK. I’m due a knee replacement but 2 surgeons have told me they will not do anything until my prednisone is down to under 3mg due to possibility of bone infection ( these are private surgeons under NHS). I’m currently struggling at 5.5 per day They have sent a referral to NHS for me to see a rheumatologist to see if I can get my meds changed as said there are alternatives to pred - even if it’s short term. I have been waiting since July and was told by my GP yesterday that I triaged as non urgent and potentially won’t be seen until May25. I really feel abandoned as have had no help at all from my doctor. I’m thinking my only option is private rheumatologist. Does anyone know of one in Kent or even London that they can recommend? Or am I being misled about alternative medicine options? Forever grateful for any help x

[suzy1959]

I want you to know that I have had 2 knees d 2 hip replacements, all successful and all when I was on 11mgs pred. Surgeons can be very scared of pred because they do n’t really understand it! My Rheumatologist says this! It is cruel to leave you with such pain when it is not necessary. If you are willing to go privately anyway then I suggest you e mail a number of surgeons and find one who is less scared of the pred.

The problem is that there is not any viable alternative and seeing a rheumy is going to be a waste of time and money for you.

[Beans-and-Buns in reply to suzy1959]

Thanks so much for replying. I’ve already booked a doctor appointment tomorrow so will see if he can recommend a surgeon who is a bit more flexible and see what happens. I just feel I’m trying to rush my tapering and setting myself back so think I’m going to have to bite the bullet and admit it’s going to be a slower process

[DorsetLady PMRGCAuk volunteer in reply to Beans-and-Buns]

If you are being rushed to taper - not by choice but because of lack of understanding of steroids by the surgeons you’ve encountered so far- then you are likely to lose control of your PMR. Ultimately that won’t help you and as you say will set things back.

You are in a very difficult situation, and although you may not to be able to get your surgery as soon as you would wish, you can at least manage your PMR with the dose it requires, so I think you have to concentrate on that for now.

Having had replacements I do know the pain involved whilst waiting so do sympathise. But if the decision is out of your hands, frustrating as it may may be, then you have to accept it might be longer than you would wish - but no harm in asking GP for recommendations.

[PMRpro Ambassador in reply to Beans-and-Buns]

If you end up with the PMR flaring - you won't be able to do the rehab that is essential for post-op recovery. So don't let that surgeon bully you into trying. Find a surgeon who DOES get the problems of managing an autoimmune condition - after all, loads of joint ops are done on RA patients where there is an alternative. There isn't one in the UK for PMR - and that isn't your problem.

[DorsetLady PMRGCAuk volunteer]

Many have had replacement surgeries on the level of Pred you are on at the moment... so you need to find a surgeon who is a bit more sensible than those you have seen so far.

As you are down to 5.5mg it's highly unlikely that any alternation to Pred will be deemed necessary to be honest.

When you say struggling at that dose, do you mean with reducing because your PMR is active - or struggling with your OA? Probably both..

Prof Rod Hughes at Chertsey is our 'go to' rheumy - for private appt -

topdoctors.co.uk/doctor/rod...

[PMRpro Ambassador]

My advice would be keep looking for a surgeon - because those obviously are very risk averse, loads of people have hip replacements on well above that and they are also incorrect about there being effective alternatives for pred in PMR. Except one that is NOT available on the NHS and even it is not guaranteed since it only works on one source of inflammation and there are at least 3 involved - I am on it and still can't get below 7mg pred.

Some years ago a lady was refused the hip replacement she desperately needed until she was OFF pred altogether - I suggested she just kept contacting surgeons asking if they would consider a patient on pred, one at her local hospital who did private work said yes, saw her privately and immediately put her on his urgent list. There are lots out there.

DMARDs, Disease Modifying AntiReumatic Drugs, are used for rheumatoid arthritis and sometimes are added in PMR to try to get the pred dose lower. However, they are not guaranteed to work and they also can take up to 6 months to have a noticeable effect if they do. To be honest - an NHS rheumy appt in May 25 is not bad at all, with PMR and on under 6mg pred you are at the bottom of the pile. Waits can be a year or more in some places. I don't know if seeing a rheumy privately would help - I don't know if they can initiate a DMARD for your GP to then manage.

[piglette]

When I needed a hip replacement my surgeon wanted me at 0 pred. After negotiation on my part I agreed on 5mg. Did you discuss the 3mg with him and try for 5.5mg? Orthopaedic surgeons have a terror of people on steroids it seems.

[SnazzyD]

One question is what happens if you have adrenal insufficiency during their reduction plan and it takes many months to regain it, keeping you on a higher dose than they’d like? No rheumatologist is going to be able to square that one with a change of meds. What are the risks then of you being poorly mobile while you wait? Perhaps you having an adrenal crisis before the op doesn’t hit the surgeon’s stats like a post op infection, but perhaps I’m being cynical. Maybe they didn’t consider adrenal recovery because it isn’t directly related to orthopaedics. Others have covered the risk of 5.5mg.

[Nightingales]

it seems like we hear this all the time and I wonder why they haven’t got the guidelines sorted out. I had three surgeries on doses ranging from 20 to 8. My surgeons and anaesthetists always gave me a steroid booster during the surgery and with my hip surgery I was given extra steroid for three days after . The explanation was to help my body deal with the extra stress of surgery. I healed very well after each surgery. Best wishes for finding a solution and a knowledgeable dr.

[tangocharlie in reply to Nightingales]

Same here, I must have been on 5mg when I had gall bladder removed and the anaethetist 'bunged in' (his words) some extra steroids to reduce inflamation caused by the stress of surgery. It does take longer for wounds to heal when you're on Pred I've found though

[Nightingales in reply to tangocharlie]

I am lucky in that I haven’t had problems with healing. For my shoulder surgery he also did a steroid wash of the site to reduce adhesions, which I tend to get.

[pegpowell]

I had knee replacement on 6 mgs, increased to 7 after. Later, before hip replacement, I increased pred from 3 to 4 mgs. Afterwards, making sure I would not have a flare, reduced by 1/2 mgs to 3.

[Tiggy70]

I had rotator cuff surgery in September 2022 whilst on 8.5 mg Prednisolone. I did get an infection in my shoulder after 2 weeks but that’s another story. 🌸

[PMRpro Ambassador in reply to Tiggy70]

I think the problem is more than this is bone surgery - and an infection in bone is seriously bad news. Some hospitals have the theatre staff fully enclosed in space-suit like PPE - looks so funny - but there is a lot of up close and physical in a hip replacement with the potential for introduction of bugs.

[Tiggy70 in reply to PMRpro]

Fortunately the infection was in the soft tissues. I was on mega doses of 2 strong antibiotics for 2 months to get on top of it. At its worst I was worried about sepsis.

[Beans-and-Buns]

thanks to everyone who has replied. I’m speaking with my GP on Monday now and will see if he can put me in touch with another surgeon who is a bit more flexible. If not feel like I just need to put up and shut up. I realise now that there really isn’t another option than Pred but hopefully they can help with tapering. Onwards and upwards. X

[DorsetLady PMRGCAuk volunteer in reply to Beans-and-Buns]

Please let us know how you get on…