Knee replacement soon & on 8mgs pred

[Esradral]

I am finally in the pipeline for one of my knee replacements in 6-8wks time. I have been reducing very slowly from 15mg and currently on 8mg. I have decided I will not reduce further until well after my knee surgery. I put on 6 stone in 6 months when I started pred, this has impacted on my knee pain causing me to be on crutches or motor chair as I am unable to bare weight due to being bone on bone. I would appreciate any information to confirm I am doing the right thing.

I suffer chronic fatigue, I sleep most of the night, tend to wake once for the loo then lay awake for an hour or so before getting back to sleep. I have to set my alarm to wake me in the morning at 7.30am , once up and washed and clothed which takes a lot of effort and is a very long process, I have a bowl of bran flakes and a cup of coffee. I then conk out until about 2-3pm when my dog wakes me with a nudge to be let out for a wee. I have another coffee, try to read the paper then conk out again only to be woken by my dog again at 5pm for her tea. My point is that if it wasn't for her waking me I would probably sleep all day. I'm in bed by 8.30-9pm and take about half an hour to an hour to fall asleep. Life at the moment is in fairy land for most of the day and night. I am hopping I can start to reduce again once the operation is over and I am well into recovery with the hope of the second one following very soon.

Do I stay at 8mg as I am nearing adrenal wakening or stay at 8mg until the second one is done?

Apologies for the length of this essay, it has taken 3 goes and dropping off in between.

[DorsetLady PMRGCAuk volunteer]

Absolutely doing the right thing - this link may help -

healthunlocked.com/pmrgcauk....

..and probably best to hold off reducing - certainly until after you’ve recovered from first replacement.. then see how you feel generally and how long before second one.. Hopefully when you have had replacements done you can regain mobility and lose some weight, which will help your all round health.

Good luck.

[Esradral in reply to DorsetLady]

Thank you so much for confirming that. I have read your link too which was very handy.

[PMRpro Ambassador]

Was this a problem at higher doses of pred too? Have you tried cutting carbs drastically to try and deal with the pred weight?

For the record, I agree with DorsetLady!

[Esradral in reply to PMRpro]

I have tried reducing carbs but didn't seem to have an effect. I probably need to be more drastic, however I have been in so much pain and even thinking about what to eat is tiresome, sounds defeatist I know but I've lost the will. I'm hoping the resulting freedom of some pain once the first knee is done and the mobility I regain, will give me new momentum.

[PMRpro Ambassador in reply to Esradral]

I have to get down to about keto level to LOSE weight, Maintaining wasn't too bad. But I lapsed in the autumn. I know exactly what you mean - I need to apply myself ...

[Miserere in reply to PMRpro]

I need to be almost keto if not actually in ketosis to maintain - so I guess I would need to follow Michael Mosley's Fast Diet guidance - 800-1000 calories/day - to lose any more weight.

[PMRpro Ambassador in reply to Miserere]

Yes, it is harder for some of us. Especially in winter and even worse if you have another health problem! I was given loads of local speciality xmas goodies and that coupled with a real resurgence of my atrial fibrillation means I have not been eating as well as I could - why are all xmas things high carb and convenient???

[tempusfugi in reply to PMRpro]

I was wondering if you are feeling better yet PMRpro. Also wondering if you will go for another booster, as this has caused you problems. Send me a PM if you don't want to answer virally!

[PMRpro Ambassador in reply to tempusfugi]

It's still happening though this week seems a bit better. I have a cardio appointment towards the end of February - see what they decide to do. A friend in the south of England has had a similar experience but not related to the booster as far as I know and her cardio had her in very quickly for an ablation. One assumes that once an ablation has been done successfully it shouldn't restart too soon. I don't know - they aren't 100% successful.

[tempusfugi in reply to PMRpro]

I wonder if that's what Tony Blair had all those years ago, when he was PM. I remember him having to go into hospital for a couple of days, connected to his heart. I will have to ask Dr Google what an ablation is. Glad to hear it seems a bit better this week.

[PMRpro Ambassador in reply to tempusfugi]

More likely ventricular fibrillation or pulseless ventricular tachycardia and they shocked the heart with a defibrillator. Atrial fibrillation isn't a shockable rhythm (neither is asystole, no beat at all, unlke what you might see in Casuality) . Ablation is when they feed a wire through the veins to the heart, identify the sinus node, a bunch of electrical cells that govern the heart beating, and zap the wicked cells that are misfiring and making the heart misbehave. If they get it right, no more a/fib.

[Merryfield]

This doesn’t help with pred issues, but I had two knee replacements in seven months. The first eight weeks are horrible but I am SO happy to be able to walk with no pain. But you must do the post-surgical exercises. Get oxy for the first night. And take pain killers or you won’t be able to do the exercises.

[Esradral in reply to Merryfield]

Oh that's marvellous news. I injured my knee 35 years ago, had it stabilized with carbon fibre ligaments, and have been wearing away slowly ever since. Been bone on bone for several years and have put so much weight on my good knee that it has now become a very sorry and painful state also. After having a DVT, cellulitis & stress fracture in my better knee in Aug 21 I have been virtually off my feet. Then came the PMR and the steroids just put paid to me with the weight gain issue. My consultant says my knee replacement is classed as complex due to the carbon fibre ligaments and I am the first person he will attempt. He said he has spoken with another consultant who has done 2 operations and been advised, so everything crossed. I am hoping once I am up and using the new knee that he will consider doing the other asap.

[Merryfield in reply to Esradral]

You'll need time between one knee and the next to get good strength in the surgical knee. You'll need a walker, toilet raiser, wedge pillow, shower stool, most of which you can probably find second-hand or from friends. Also a band to exercise with. Glad the surgeon is putting advisors together. They knock you out so when you wake up you have a new knee.

[PMRpro Ambassador in reply to Merryfield]

In the UK all those items should be issued by the hospital physiotherapy/rehab department. Usually there is a home visit to assess needs before surgery. and patients should not be discharged home unless they are safe.

[Merryfield in reply to PMRpro]

That’s wonderful. We get a physical therapist after and a computer questionnaire right after with some follow-up doc appointments. But we are on our own as far as equipment goes. I needed my husband to manage the meds.

[Esradral in reply to Merryfield]

I already have most of those items and more as I have become housebound the last year, unable to take my weight as the grinding in my knees is excruciating. I can't stand without crutches and can only walk about 10 meters with them, apart from the pain I become very breathless also. My partner bought me a motorised chair to enable me to pop out into the garden and go for a small jaunt around a garden centre with him just to get me out. I know my excess weight is causing a lot of this but when I have a vascular consultant telling me to raise my feet as much as possible throughout the day and I don't really eat that much but obviously I'm not being true to myself otherwise I wouldn't be in this predicament. When I seen a physio during pandemic he told me some exercises to do and then told me to try and massage it.... hence I had just the one visit. Waste of everybody's time. There has been a time lapse of around 2 years since I last seen my consultant, in which I have been diagnosed with PMR and DVT and all associated issues and meds, no wonder he was scratching his head.

Oh and they won't be knocking me out, I have to have a spinal, due to my weight.

[Merryfield in reply to Esradral]

I had been in denial about what I was eating, was technically obese and pre-diabetic. If I had not been those things, maybe my blood sugar would not have spiked on steroids and given me diabetes. Paying the piper now.

[Esradral in reply to Merryfield]

Yes my last bloods resulted in a letter from my doc surgery saying I was 'almost' pre-diabetic! So what do I do? It would help if the doc gave me a helping hand on what to try. No worries as usual I will have to look it up or preferably speak to people like yourselves on these hubs.

[PMRpro Ambassador in reply to Esradral]

We recommend that everyone, but especially anyone pre-diabetic, cuts their carbs drastically when out onto pred. In particular, processed foods should be pretty much eliminated and fruit strictly limited as fruit has a lot of sugar. There are people on the forum who have reversed their pre-diabetic state and a couple who have managed to reverse Type 2 diabetes by doing so. Some people need to get to lower carbs than others.

This is a handy website to start with - clear picture guides to what is good and less good:

dietdoctor.com/low-carb/foods

[Esradral in reply to PMRpro]

Thank you for that info, I have been browsing and will study in more depth, I need to shift this weight. Looking through I rarely purchase processed food and cook from scratch as much as possible, although there is only so much you can do from a perching stool unfortunately, especially when my gripping skills let me down... but that's another matter. I have gone back to real butter and extra virgin olive oil and need a bowl of bran flakes with skimmed milk to keep me off the Laxido. Other than that the small amount of bread and the odd jacket spud may be letting me down. I use all sorts of veg often and have a salad once a week. I have even found a pasta made from yellow peas which is all protein, expensive but needs must.

[Miserere in reply to Esradral]

I managed to reverse my pre-diabetes via diet and now eat low carb all the time and definitely low sugar, although Christmas was a challenge! Perhaps use some of Michael Mosley's recipes - his latest book is 800 Keto. The recipes are usually quick to prepare and tasty. Otherwise a keto-type diet will help.

[Bella59]

Hi i had both knees replaced eleven years ago.I had six months inbetween ops.I had spinal for both ops with light sedation.It is hard doing exercises but thy must be done to strengthen your muscles,and get a good bend.Regarding prednisolone i was on this med Sept 21 when i had my. first hip replaced.My surgeon insisted i cut back pred to 5mg before he did op.I had came off pred in April2021 as i had reduced slowly i had Polymyalgia.Unfortunately it came back quite quickly.I was put back on 20 mg pred in july and reduced to five for my op.Last year got second hip but was allowed to stay on five mgs.Has your surgeon not advised you regarding steroids?Good luck with your op.

[Esradral in reply to Bella59]

No he didn't appear concerned about the steroids when questioned, but did stipulate that my blood thinners, Apixaban would need to be stopped 3 days before the op. I don't know I think he is only concerned about carrying out the op and leave the rest to the anaesthetist. Thank you I need all the luck I can get.