Dear friends, I've picked up from your posts that quite a few of you have had replacement surgery while on Pred and would like some advice. I have severe osteoarthritis in right hip, it's been there for years getting slowly worse but as it never gave me direct pain but only tightness and restriction in walking on and off I've thought it was a muscle problem until my latest physio sent me for an X-ray. Fortunately, I have a very basic Health Insurance that too my surprise will pay for the whole procedure - in the UK the present waiting lists are years. I do not feel well enough to go ahead immediately as I'm struggling at the 6 1/2 down to 6mg Pred taper and have to deal with bad days of adrenal withdrawal (going very slowly 1/2 mg about every 6 weeks). At what stage did others feel well enough to cope with major surgery? I also worry about keeping muscle fitness as PMR has left me very weak in the thighs and legs. I try to walk- 15 to 20 mins - but it's increasingly painful and I'm trying to keep my yoga exercises for the back and core going but have to heave myself up from the floor with arms. Any suggestions, please.
Thanks to all you lovely folk who have listened and advised throughout the long isolated months of Covid. You have been true companions.
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oscarandchloe
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Looking at it with cold logic, if the pain is from the PMR you need to increase because it isn’t going to go away and impaired mobility will make you weaker. If it is the arthritis you need to get your mobility back from that for the same response. A frank chat with the consultant needs to be had to balance out the benefits of becoming pain free in the medium term and getting on the rehab ladder however long that is and the risk that weak muscles may slow your rehab and possibly the Pred. Of those that I’ve seen struggle with replacement it was those who remained weak from not doing the exercises or giving up for various reasons. However, being in constant pain is very stressful and debilitating it may make your adrenal recovery smoother if the arthritis is lessened by the op. Trying to get through the worst dose range for feeling rubbish whilst in constant pain sounds like a humongous task. When you have the op, they will give you extra cortisone anyway to keep you safe. I think there needs to be a priority decision which I venture to say is deal with PMR pain first because you’re going nowhere is that’s flaring, get the op done perhaps with an increased dose of Pred if required and then think about your adrenal recovery after. As for when people are ready, it’s highly individual because there are so many factors at play. Ultimately it’ll come down to the surgeon.
Surgeons vary in the dose at which they will operate. One lady on the forums some years ago was told by one she had to be off pred altogether - but she was next to immobile and a wheelchair was next. When she decided to try privately she found a local surgeon who was happy to operate at her current dose which was well above 10mg which was what she needed for the PMR to be able to mobilise post-op because THAT is crucial. The guy put her on his emergency NHS list because it was so bad and said what I had said: they know they get better results sooner rather than later before the patient's condition has deteriorated further,
I would say get on with it and have it done - I know several ladies who actually then sailed down their pred dose post-op - it was as if the hip pain was feeding the PMR.
Yes the Same no steroids for me and only if it’s necessary or o have a bad flare up I too am going for him Replacement on Tuesday so thanks to everybody for the advice
I can’t really add much to the advice you’ve already been given on here. All I can say is that I had a total knee replacement six years ago (pre PMR) and despite some complications, the benefit was enormous. I had got used to limping and struggling through pain and stiffness everywhere I went, and it wasn’t until I had a new knee that I fully realised the impact on my life. The physio was great, I was given tailored exercise and was able over a period of time to build up my leg strength. I would say now that it’s been one of the best things I have ever done 😊
I know you are in a different situation, having PMR and having hip pain not knee, but I’d definitely look into it.
I have had two hip replacements. My surgeon said that the steroids might have caused problems with the cartilage too. I did negotiate on my pred dose with him before the op. He wanted me down to zero, I think they say that because it makes it easy for them. I actually was on 6mg and suffering from the deathly fatigue. The trouble is things will not improve with hips you just slowly get worse. I really needed a wheelchair in the end before the first hip. I had the first on the NHS and the second privately.
Yes- my GP when the X-ray came back. No cartilage left round the socket so there's a gap. My actual hip hasn't ached or hurt until very recently but it seems worse now day by day and this stops me exercising my weak PMR muscles. I'd hoped to keep going until early Spring next year when I'd be much lower on Pred, my adrenals had picked up and the better weather would help with walking outside as I don't fancy hobbling on sticks in the rain and Winter. I've yet to see the surgeon so I guess this can all be discussed then.
I went private last year and first talked to the surgeon in March. I did not actually get my op until September. The important thing is to find a top class surgeon. Someone who others recommend and has done lots of hip ops. It is a good idea to take your time ensuring that you get it right.
It seems that Spire had signed a deal with the NHS to hand over the hospital to them. My surgeons secretary said that all the staff were being paid by the NHS and doing very little. She seemed pretty horrified by it all.
Hi, Unless you really need op I’d put it off if I was you, only because it’s bad enough with having this illness without having major surgery on top. I’ve not long ago had major surgery and I’m really struggling to improve, it’s not happening at the moment, it’s obviously going to take a lot longer than I thought it would 🙁
Thanks, my instinct is to get myself better on the PMR front/ weaning off Pred. but perhaps I should just go ahead if this only means making my body less able to recover physically after the op. It's a quandary!
I had a hip replacement while I was on a low dose of prednisolone and strangely my PMR which was on the wane anyway disappeared completely after my operation. I had the most fantastic surgeon (Professor Richard Field)and anaesthetist and they did an anterior hip replacement so the muscle on my hip wasn’t cut. My recovery was very quick but I was quite fit having kept Pilates going all through my 4 years of PMR and the anaesthetist gave me a large dose of dexamethazone during the operation which helped a lot. I think having a conversation with a good consultant/surgeon is your first step.
I had active GCA and PMR in the years before my right hip replacement. Cartilage eaten by the preds, it seemed. I had been off the preds under six months, but by choice, not because I was without PMR pain. GCA had been suppressed for almost 2 years and I was at the end of that tapering. With so little mobility left, I felt I needed to stop the preds before they ate the other leg as well, PMR or not. Had the operation and spent 4 days in observation afterwards, where I sweat 1 KG in water every night. Lost 4KG. Night sweats like in the old days, soaking in it. Doctors told me that testing for anything in my condition would be useless. But, they really forgot to check my files and do their homework. "Regular surgeons regularly prescribe steroids for a more stable, safer recovery from an operation." Instead, I was sent home, operation declared a success. At home I decided to self-medicate, with some help from the forum here, worked my way down from 20MG to 0 in 2 months, and ended up clean and healthy, except for the relentless PMR. BTW, Hip-rehab was no worse than coming home with a cast around your leg after you broke it.. Within days things improved drastically. I never exercised. I just did my daily chores, house, kids and stuff. Getting in and out of the car is serious training. Lifting the foot from accelerator to brake was the hardest. Anyways, 1-2 months after the operation I was so sick of all the endless pain-, sleep- and mood meds, I went the Chinese medicine way while phasing out all the benzos and opiods. I either found a very good doctor, or by miracle I happened to be cured during that period. 2 months it took to feel good enough to stop taking those Chinese meds and I have been pain-free ever since. Must be over 6 months now. Regarding the hip operation, the surgeon will have to face up to the fact he made a mistake somewhere, since a muscle or a nerve gets stuck in the joint, a few times a day, causing me to limp quite badly, sometimes for hours in a row. They'll have to go back in, I am afraid. But, despite that... there are few ways to express how this operation allowed me to believe in having a life again. The less mobile we get, the more we shut down, and so does our body. Good luck@!
Thanks so much for your story StanDieks. I'm ditching as many as the drugs as is possible. You give me encouragement that the op will allow me to be more my busy self again.
Yeas.. our meds. All our meds! It's never just 1 type.. Thank heaven they exist when we need them but boy o boy, Big Pharma works hard to keep us popping pills forever. I barely believed Chinese meds could even make a dent! But such a quick cure? We need to really keep reconsidering options, take control of what we take in. Limit where possible. On that note, may I add an often unpopular item to this story? Food. Unhealthy food, to be exact. Yes, stress, comorbidity, and other factors matter a lot, but most of us have a choice in what we eat. I found a clear correlation between my health and my food habits. My GCA tapering(s) went better when I decided to lose every inch of unnatural body fat and had rid the house and my life from all factory-made food. I observed the changes in my elaborate blood work over time, compared it with my habits. LDL levels really shoot up quickly, after just 1 pizza per week. Just 2 preserved dates per evening for 3 weeks showed up on my glucose levels a full 12 hours later. Pretty much everything in our kitchens and refrigerators is stuff we should not be eating at all. We have heard it, we are aware, but nearly all of us quietly break the rules in a thousand small ways every year. I am not claiming anyone should be a vegan, but our bodies should be living of fruit and fresh- or freshly cooked vegetables. Don't be a vegetarian either, but we should really refuse all industrial meat, no matter how pretty the label, or how nicely priced. Don't eat farmed fish, ever. Salmon is the most polluted fish out there. Heavy metals, hormones, bacteria, viruses, anti-biotics, animal vaccines, we all end up ingesting that stuff. Nobody even knows what bacterial or viral load we may be ingesting each time, and each time our immune system has to work hard to keep up. Sauces, pastas, dressings, and the endless amounts of corn-syrup-laced corn and flower fabrications, it all mounts up to an incomprehensible list of chemicals and pollutants that all end up having to co-exist in your body. Peel your apples, or better, don't have them. They are heavily sprayed. Cherries, strawberries, drenched in "legal" toxins. How are all of these not going to interact? Off course they do. I understand an actual shift is hard after a life of fixed habits. It is hard if you have diabetes. It is hard if you have an eating disorder. It is hard when you are stuck at home, alone or in pairs. But, if we really want a shot at ridding ourselves from a few pestering immune diseases, we need to be aware of our excuses. Healthy food, healthy snacks need not be less tasty or more costly. It may take more effort in the beginning, that's all.
Hi Oscarandchloe, I had a full replacement late May this year, was a on 2 mg and alternating with 1.5mg. I know it is less than what you are on but my surgeon was not concerned at the level and did not have to vary dosage prior or after operation.I was lucky that I was back golfing after about 5 weeks and found rehab exercises very helpful but the one thing that I would suggest if you can manage is-
Do as much walking and other exercises in water at waist to chest height prior and post operation, the results have been absolutely great for both myself and others with hip replacements, the low weight bearing in water is just magnificent.
Hi, I had a complete hip replacement 3 months ago, I was on 2.5mg preds with no flares with PMR and GCA . On the day of the surgery they upped my preds to 5mg, I never had no flares until I started cutting down 1/2mg following week where I am still having problems with but now 3.5mg which is only just keeping the flare up steady. I am still struggling with left leg and hip but xrays showed the operation was good, I have osteoarthritis due to steroids my consultant told me but at least the bad joint has been cut out 🙏🙏 my muscles are still weak and hope they will get stronger, talk to your consultant about it all to ease your mind, good luck 🙏🙏
Hi, I have had both hips at separate times while on Prednisolone 5mgAnd also open heart surgery while on 4mg. The latter 2019. I think during surgery they may top up the steroids, but they know what to do.
Well I’m now down to 2mg one day 1mg the next. However this is my second bout of pmr, and getting off the last ones is really hard.
I want to encourage you to have your surgery ASAP, speak to the surgeon’s sec, saying about your level of pain, they are usually good at passing it on.
The relief after a hip replacement is wonderful! You need it, go for it, they will manage your steroid needs.
Thanks for the positive comments, I've never had any sort of op before and this one sounds rather gruesome. I've made an appointment with the surgeon for 16th October - a Professor Oliver Pearce. It was rather daunting to have a choice but I looked up their profiles and then patients' comments. I can see that Pred medication not not be a barrier to having the op. I'd just like to feel less fatigued and wobbly re - 6mg zone.
I had my hip done in May this year whilst on 9.5 mg Pred. No problems at all. Has given me my life back as couldn't weight bare or carry things etc. All my pain was in my knee coming fron the hip. Now pain free and no more 8x Paracetomol to get through each day.
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