Coming off Pred for an operation : In three weeks... - PMRGCAuk

PMRGCAuk

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Coming off Pred for an operation

Kalacik
Kalacik

In three weeks time I’m having a knee replacement and need to be off steroids as I have many other autoimmune illnesses, heart problems etc.

I’m finding myself in a total mess emotionally and shaky and exhausted, which is not the same as a chronic fatigue crash.

I’ll need to get the 2nd knee done 3 months later. Certainly not looking forward to the next few months.

Has anyone had a similar experience? Currently in the process of reducing. Will be down to 10mg from 20 tomorrow am currently on 15

46 Replies
oldestnewest

Hi Kalacik

This is an unusual approach, has it been discussed with the anaesthetist as well as the surgeon? Obviously if you have many other conditions the thinking may be different but most of us who’ve had Surgery while on Prednisolone have remained on it & are given hydrocortisone cover while in theatre.

Tapering so quickly will have a negative affect on your body.

I will copy your post to PMRPRO for her advice.

Kind Regards

MrsN

Hello, have you been told this? Others have had major musculoskeletal ops on Pred with no problems and they may well reply. I think you need some questions answered by them. What I would worry about most is how they are intending to support your adrenal system because with your previous dosing there will likely be non existent activity for some time. To operate without a functioning and unsupported adrenal system, you would almost certainly go into adrenal crisis which can be fatal. Perhaps they are going to bung you full of Injected steroids to cover you in which case, why bother reducing to nothing? Others have taken their normal dose and then had extra steroid injections on operation day.

You are likely suffering from horrendous withdrawal symptoms such is the precipitous reduction path and this alone is just not fair, not least you are then going to have major surgery with all your other auto immune conditions potentially out of control. So, the other question is, if you are being told to come off them to help with healing, how long are you supposed to be off them? The effect of Pred doesn’t stop the moment you don’t take a pill either and in addition, wounds take weeks and months to heal, not just the few weeks for the skin wound to knit together. Then you are going to have another op three weeks later? What is the long term plan?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to SnazzyD

I think the time is 3 months, but having had knee op, I would want to wait longer than that...I thought 6 months was pushing for hip replacement following knee and I wasn't on Pred and I heal very quickly.

PMRpro
PMRproAmbassador

If you are currently on 15mg and have been higher then you need to find a different surgeon very quickly and you must speak to your rheumatologist as well. You CANNOT stop long term steroid treatment as quickly as that as not only will the PMR resurge to a state where you will be unable to mobilise post-op and it is well known that poor mobilisation post knee replacement mostly means a very poor outcome but also you are putting yourself at risk of an adrenal crisis. There are quite a few people on the forum who have had joint replacement surgery while on 10-15mg per day of corticosteroids. Whether 10mg is enough to manage your PMR is impossible to say - it may well be - but it is a reasonable dose to provide day to day adrenal cover in the meantime. Plenty of surgeons admit that while they prefer lower steroid doses they are perfectly able to operate in emergencies at any dose of steroid. If you are having bilateral TKRs just 3 weeks apart you need to be physically as well as possible to make the surgery a success - having the 2 done so close together would be hard work for someone fit, for someone with active PMR it sounds a nightmare.

You are already showing signs of poor adrenal function in your response to the stress of being expected to do this. It is also likely that your surgeon is unaware of the nature of PMR - not surprisingly since you are in Cyprus where it will be fairly uncommon as the incidence of PMR decreases the further south you go in Europe. Please discuss this in detail with your rheumatologist AND your endocrinologist - I assume you have one for the diabetes?

Kalacik
Kalacik in reply to PMRpro

There are no rheumatologist s on this side of the island and the border is closed. I don’t see an endocrinologist either

PMRpro
PMRproAmbassador in reply to Kalacik

Oh dear. But you really must get your surgeon and anaesthetist to see sense. They are capable of consulting an expert by video conference if they aren't up to speed themselves.

Kalacik
Kalacik in reply to PMRpro

Sorry I meant 2nd knee in 3 months

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Kalacik

That's what I read...unless you've edited since.

Having had my second hip op last week I have decided that orthopaedic surgeons know absolutely nothing about steroids. My surgeon could not understand why I could not just stop taking steroids, he seemed to think I was taking them just for the fun if it. Interestingly enough the anaesthetist thought I should double the dose.

MrsNails
MrsNails in reply to piglette

Ah The Gas Man is the one to listen to!

How are you doing?.....

PMRpro
PMRproAmbassador in reply to piglette

How are you doing? Had you told us you were going under the knife again?

piglette
piglette in reply to PMRpro

I had not mentioned it because I thought it would be a walkover after last time when I got that amazing blister. I decided to lash out and go privately last February but a virus called Covid decided to put a stop to it for a few months, aghhh pain! In fact I stayed in nine days I came out on Friday after nine days of virtually no sleep and very little food as the drugs make me feel really sick. Also private hospitals have to go by NHS diktat on nutrition which means giving you a picnic bag of sandwiches, crisps, Kit Kat and an apple. My body was screaming out for protein and vitamin C. I found a wonderful menu they had with lots of different eggs for breakfast, croissants and really yummy things only to be told that was no more, RIP, thanks to the NHS. Apparently everything had to be brought in pre-packed and probably doused down with bleach.

I stayed in for nine days due to a few glitches, new blister appeared again, the nurses had different coloured pens to draw round it in different colours to see how it was, with dates there too! My legs are a work of art. They kept hunting round for new coloured felt tips. The only trouble is they are indelible. My surgeon was most disapproving and then was actually using the information himself in the end. My surgeon brought in a plastic surgeon pal and they had a long conversation where they disagreed on anti coagulants. My surgeon was all for them the other guy being totally against. Got sent down to xray for an ultra sound check for DVT and the monitored my feet using Dopler during their general monitoring of BP, etc. Over the next few days he ummed and ahhed and in the end I went home without them, the other guy won. Out of interest the blister burst on the day I came out so I have had to arrange a district nurse. Groundhog Day.

The glitches were the day after the op they decided to take blood and put in a cannula. The phlebotomist turned up and failed, so she called in the house doctor who failed, so he called in the senior anaesthetist who failed. In the middle of all this I decided to faint so the crash team was called in. Plus a quick ECG. It was very busy in my room. The house doctor crept in that night and managed to get blood out of me over a period of time and a lot of determination with lots of feeling my arms with no gloves and succeeded! He was so pleased with himself. The phlebotomist had refused to work on me again.

My stay was extended by a day because of the blister, so I decided to have a shower. Toddled down to the super shower, dried myself put on my nightie, felt awful, sat down on some rubbish stored in the shower room and fainted. Crash team again, they have a trolley with bells rather like being at a fair. They needed to take me to xray as someone had noticed one leg was 5cm shorter than the other. They then had a group discussion of how to get me out of the shower room onto a trolley which could have been a BBC sitcom. I was in agony, as they rolled me across from one thing, mats, lilos, trolleys to another. Trundled down to xray which had no CT scanner to make things easy but had steps going up to your big standard xray machine. More debate about how to do the xray. In the end it consisted of rolling me across from one area to another with hard things under me. They would say we are going to roll now and I would think this is going to be hurt. Someone mentioned they had booked the operating theatre for 5.30pm as the hip was dislocated and it was midday and I was thinking how will I stand the pain until then.

The hip went back successfully but during the faint I managed to get a bad laceration in my lower leg which went down to the bone. So I actually had a consultant surgeon sewing me up, I think he was prouder of this than the hip op! I suppose he normally delegates such mundane things. Because of the fainting they wheeled in a consultant cardiologist who had the most amazing machine, you could see the heart in 3D with colour even. The fact he was a pretty dishy Italian also helped. His diagnosis was my heart was fine but I should drink more water, I suppose he had to say something. The results of the faint was I was monitored 24 hours on automatic machines that checked every fifteen minutes and they would wake me up over the night to shine light into my eyes. When I fell in the shower some of them were saying I might have hit my head so they decided to do checks on that too. I spent my time having goodness knows what pumped into me, at one time I had three cannulas. The trouble was they were in really inconvenient areas of my arms, even near my shoulder, places I am sure most cannulas had never been before, and stopped me actually using my hand to type properly as one was at the front of my hand.

The fact that I had had virtually no food and no sleep, the following day I fainted again, crash team in action again and the usual party in my room. I was now known throughout the hospital and people coming back from holiday were told the saga and were coming to hear it from the horse’s mouth. They decided I needed a blood transfusion, I had a double dose which took six hours to get into me finishing around one o’clock in the morning. I must admit I felt fantastic after it. My surgeon by this time had given up and handed over to the medical team to check the faints. The following afternoon they came in to say I was being transferred to the NHS hospital and they got my case packed. Luckily this was postponed, possibly the NHS hospital told them to push off they had Covid to deal with. So I was there for another night of monitoring.

The blood transfusion has obviously made me feel more aggressive and I asked to see my surgeon the next day to say I felt like I was in One Flew Over the Cuckoo’s Nest, I had come in for a hip replacement not to check why I had been fainting off and on for the last sixty or so years. Thank goodness he listened and convinced the doctor in charge of the medical team to let me go home. Phew!!

The sad thing was in all this time no one mentioned my poor old hip and I had virtually no physiotherapy, however the head physio saved my life by organising a decent mattress to take over from the uncomfortable ripple one for me and he even stole a comfy chair, so he was my true hero. He actually thought about me not the science.

So quite an eventful nine days!

PMRpro
PMRproAmbassador in reply to piglette

You should write a book!!! I trust you got a rebate for lack of decent food. But I don't understand it - No 2 daughter just spent a week in York NHS hospital and got "real" food, inasmuch as any UK hospital food is real. I'd have died of hunger as I can't eat any of that. And when you consider that healing really is supported by good diet ...

piglette
piglette in reply to PMRpro

It seems I had payed for the whole operation as a package, so the extra op, various consultants and the blood transfusion were included. No wonder they wanted me transferred to the NHS! There is obviously an admin problem as why was my leg lacerated in the shower? - health, safety and insurance!! I had the finance team visiting me as well as everyone else, they said they would be phoning me when I got home too. Possibly when they have trouble explaining it all away.

Interesting about York NHS food, someone local said the NHS round here had reverted to this picnic style, before Covid. Some hot food would have been nice.

PMRpro
PMRproAmbassador in reply to piglette

One meal a day was a sandwich but lunch was a proper meal. Maybe it is an extension of the mistaken assumption patients only need to be in hospital for a couple of days for surgery - and of course the day you have surgery you don't eat at all. Our daughter was told initially she'd be home next day - with indwelling catheter and an hour on blue lights from a hospital of any sort.

piglette
piglette in reply to PMRpro

Things like any common sense seems to have died.

PMRpro
PMRproAmbassador in reply to piglette

It's certainly not very common these days!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to piglette

ouch, ouch and triple ouch !🤦‍♀️

123-go
123-go in reply to piglette

You poor thing! I read this with horror mixed with some very unsympathetic giggles bubbling below the surface because of your brilliant writing style and I agree with PMRpro- you could make money out of your story.

Are you sure you were in a hospital? Sounds more like a 'Carry On' film set!

MrsNails
MrsNails in reply to piglette

Oh Piglette......

What a Story, you couldn’t make it up!

But how is your hip now? Has there been any follow up or discussion as to what happened & why?

Hope you’re doing OK?

MrsN xx

piglette
piglette in reply to MrsNails

Dear Mrs N, you are the very first person, including my orthopaedic surgeon, who has actually asked me how my poor old hip is. It seemed to come rather down the list with everything else. They were so busy finding out why I had fainted and worrying about the blister on my leg, then adding to it with a laceration to the bone. Probably insurance and health and safety took over in their minds too. My hip probably dislocated as a cry for help to be noticed! I must admit I had forgotten about it too.

PMRpro
PMRproAmbassador in reply to piglette

Hey - I asked how you were doing - that was aimed at the hip situation!!!

piglette
piglette in reply to PMRpro

Ah, it was the word hip that was missing!! You probably thought that was the only thing that got involved. Oh no!

PMRpro
PMRproAmbassador in reply to piglette

Well I sort of HOPED that was all that was involved ...

MrsNails
MrsNails in reply to piglette

I do hope your hip is on the mend, it’s strange how everything else can override the initial issue.

It was just as well you’d opted for Fixed Price Surgery otherwise it’d have been a nightmare!

Has the blister healed now?

You take care 🤗🌺

diana1998
diana1998 in reply to piglette

Oh poor you. Sounds a living nightmare. 🤑 Get better soon.

VAl4266
VAl4266 in reply to piglette

OMG I can’t believe what I’m reading, run.

piglette
piglette in reply to VAl4266

I thought I would never get out, but I am actually home now, totally exhausted due to lack of sleep and starving hungry!

Longtimer
Longtimer in reply to piglette

And happy in your own bed!...what a story, but nothing surprises anymore.....

Hope you continue to heal....

Six weeks ago I had surgery as I fell off my bike and fractured my wrist in three places. I was on 3 mg which I continued with no Problems at all.

I have had 4 joint replacements done whilst on 11mgs Pred. I never had any problems with either the surgeon nor the anaesthetist. They should be able to operate when you are on steroids. It is dangerous to mess about with your meds before and after what is a trauma to your body.

What a story!

I spent 2 days in hospital and told them I was a lacta ova vegetarian and didn't get a meal during my stay!!

A crash team had to come in to revive me after my procedure!!

I had a major operation at Christmas and stayed on Prednisone- coming off so quickly sounds impossible to me but that’s based on my experience not medical. It doesn’t sound right. Personally I would get that checked again

I have had both knees replace, but I had mine 3 month apart and I was healthy then , I really would not recommend you just having 3 weeks between each replacement , I could imagine recovery being very slow and painful. Best of luck .

All of this does make you worry about "medical experts" of any shape or form - but it should make us all the more confident about questioning what "they" tell us!

This forum is an absolute Godsend........

During 4 years of predisone, I have had 3 cardio caths, stent placement 2x, rotator cuff repair, 2 kyphoplasties, and several skin cancer surgeries etc. . I was allowed to take in all instances

When I've had operations the anaethetist has INCREASED my steroids

I had tapered down to 7.5mg pred when my aortic arch replacement surgery became necessary. The heart surgeon, cardiac specialist, rheumatologist and vascular surgeon all decided, in their regular meeting, that my pred should be increased back up to 10mg daily for the period of the surgery. But my methotrexate for my immune system disease (GCA) had to be ended two weeks before the op and restarted 4wks after, once I was on the road to recovery proper. So it does sound odd what your doctors have advised, and it also sounds like you are tapering your pred way too quickly. Beware of adrenal crisis which I would not recommend on top of any operation. My advice is to discuss this further with the doctors and surgeons assessing your case.

Kalacik
Kalacik in reply to Brantuk

Thank you

I had two knee surgeries, one hip and one shoulder and for all of these I stayed on my prednisone dose. I don't know why they just wouldn't monitor things for you. I'd check with your anesthesiologist.

Kalacik
Kalacik in reply to artfingers

Problem is there apis not autoimmune disease in Cyprus. However , having explained to them ,and all the comments on here really helped , I am having op next week while still on 15mg. Dr will also have steroid drip ready during op.

Don't want to increase your anxiety but I think you really need to seek Medical advice pre -surgery. After my last Synacthan test the endocrinologist said my adrenal gland activity had improved but was still not 100%. I had been on 4mg of Prednisolone for about 6 months, managing my PMR , during which time I had a Hip replacement Op. The Endocrinologist said " just a minute, you mean, you went into the Operation without increasing your steroid dose? I'm glad you are still alive!". He gave me a Steroid Card to carry to show to any Medical Practitioner in case of future treatment and advised I increased my dose of Steroid in any situation where my body would be put under greater stress to get me through that period, in discussion with the medical team. All best wishes,

Linnetbird

Thanks all I discussed your replies with my gp etc and had op last week still on Pred and all ok

PMRpro
PMRproAmbassador in reply to Kalacik

Excellent! How is the recovery going?

Kalacik
Kalacik in reply to PMRpro

Ok thanks but sore. Only have paracetamol for pain. Have recommended exercise from NHS. Was an interesting experience in a very basic country

PMRpro
PMRproAmbassador in reply to Kalacik

I can imagine! All the best

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