Prednisolone and Surgery

[maxxgarry]

Hi, I have been taking steroids now for at least 6 years. I am currently taking 20mg daily. I have read several articles on this site regarding the need for extra doses when undergoing surgery. Is this correct and if so what are the likely consequences of extra not given.Your expert knowledge would be very much appreciated.

[SnazzyD]

If you are undergoing surgery, the anaesthetist should take this into consideration and the medical team afterwards. It depends on the surgery too as to how they would manage the dosing.

Looking at past posts it seems like you have been on 20mg most of this time. Is that correct or have you had to increase for a flare or some other reason?

[DorsetLady PMRGCAuk volunteer]

That’s something that should be discussed with your surgeon and your anaesthetist.

[PMRpro Ambassador]

Not so much extra dosage, especially at the dose you are at, but what the surgeon and, above all, the anaesthetist decides is appropriate for a long term steroid patient. Usually a boost of i,v, hydrocortisone is give intra-operatively and then post-op sick day rules would probably apply. However, they stipulate doubling the dose up to a maximum of 20mg - and you are already there, Then after that, there is the question of whether the procedure led to a flare in disease activity - and that you can't tell in advance so it would be dealt with in the event it happened.

[maxxgarry in reply to PMRpro]

Thank you for your information. I have in fact had surgery (spinal). A couple of days after surgery I experienced tremendous pain and continuous sweating. Despite repeated requests for help I was left to suffer for several days. I was left with the impression that my degree of pain wasn't believed. However on reflection could it have been down to the lack of help as I have been taking steroids for some considerable time.

[PMRpro Ambassador in reply to maxxgarry]

Sounds a bit adrenal insufficiency-ish. It is appalling how some HCPs will ignore a patient's pain. Everyone is different and the degree of pain is theirs, not anyone else's.

I had that experience - post op asked for pain relief. The charge nurse took it upon himself to tell me I had to wait and put up with some pain. The surgeon appeared for his round and asked how the pain was, awful I said, ask for pain relief he said. So I told him exactly what the charge nurse had said. I got my pain relief - and an apology!!!!

[piglette]

What sort of surgery are you having? If you are having hip or knee replacement I know my surgeon would refuse to operate on you at 20mg.

[caftan]

Hello, I was very interested in your post this morning and wonder if you could please tell me more about your journey with PMR and how old are you? I was diagnosed in August 2019, exactly four years ago and my GP started me on 15mg. Despite one or two flares I managed to get down to 4 and a half mg per day until about 6 months ago when I had another flare and had to go back up again to 15 mg per day. I have now managed, with difficulty, to get down to 10mg where I have been stuck for more than 3 months. I feel I cannot begin to taper again as my fatigue is so bad. My GP has referred to me to a rheumy but there is currently a 6 month wait in my area to see one, so after some thought I am considering going private. Have you seen a rheumy and what was his/her advice? I am now 83 years old and I don't want this awful disease for the rest of my life. I live alone and Ii is hard enough at my age without PMR! Thank goodness I can still drive so I am able to do my own shopping and go out whenever I can. I also have an electric bike which I love and can still ride, although I do get a bit more nervous about getting on and off these days as the bike is quite heavy.

[PMRpro Ambassador in reply to caftan]

It isn't clear who your post is addressed to - if it is Pottawattamie then his story won't help you as the only alternatives to corticosteroids for PMR are biologics called IL-6 inhibitors which do work pretty well to get patients off pred. However, neither of the two available (Actemra and Kevzara) are approved for use in the NHS in the UK and the only option would be to pay for the medication privately - in excess of £12,000 per year for the frug alone and the costs of private consultations on top. These drugs don't cure PMR either, they are basically very expensive steroid sparers and the hope is that the underlying autoimmune disorder burns out while you are on it. Most patients need it for at least 3 years, sometimes more, and at present in the UK Actemra is approved for use in GCA - but only for one year and then stop after which a large proportion of patients relapse and require pred again.

The most likely thing you would get out of seeing a rheumy privately is to be put on methotrexate, a so-called steroid sparer which works very well for some patients but not at all for others and for some the adverse effects are very unpleasant - the fatigue I experienced with it was overwhelming and I venture to suggest if you can ride a bike, even if it is electric, then your fatigue can't be that bad. On MTX I could barely walk around the supermarket! But I'm not sure how a private rheumy putting you on MTX would work - whether you have to pay for private prescriptions too. GPs can't initiate MTX, it must be a specialist, but I don't know how the ongoing scripts work. But you may find that once you go privately you have to fund it longer term, not just a single consultation which in itself will be IRO £200 or more.

I don't live in the UK and am on Actemra which has allowed me to get from nearly 20mg to 5mg in something over a year. But for me, it does nothing for the fatigue, that is a common part of autoimmune disease. I also have a form of PMR that repeatedly has relapsed in the last 18 years - each increase in disease activity has meant I need more pred,

[caftan in reply to PMRpro]

Sorry about that, I was replying to the post by maxxgarry but thank you for your advice about the rheumy. I will think twice about going private now. I recently went private for an ENT appointment as there was an extremely long wait to se a specialist. I have been suffering from very bad vertigo so have now seen specialist and had an MRI scan on right ear. Result should be known next week.

[PMRpro Ambassador in reply to caftan]

I'm afraid that with PMR in the UK, there isn't a lot of choice: pred or nothing and suffer the consequences. And you need enough pred to manage the pain and stiffness or it isn't worth it. Adapting your lifestyle is also essential - if you haven't seen it before, the links here may be helpful

healthunlocked.com/pmrgcauk......

I also live alone - in Italy, my entire family is in the UK and I don't really fancy the weather or the bills ... I'm a lot younger than you but I can't ride a bike, too heavy for me to handle at all so it is car for heavy shopping and walking to the village for small messages. Luckily the public transport system here in South Tirol is exemplary and cheap but I can't carry stuff far so a car is essential.

[Suffererc]

I had surgery recently but I wasn’t on such a high dose as you. The surgeon upped my steroids to 2 x 2 days at 29mg and 2 x 2 days at five. Then I was left to my own devises again so went to 5 then 3 then slowly to my normal dose 😊

[Suffererc in reply to Suffererc]

2 x2 days at 10 mg not 29 😊