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PMR versus arthritis

PMR versus arthritis

I have Osteo arthritis in my knees as well as PMR. Booked for knee replacement at the end of May. So I have to reduce prednisone to zero by then as it increases the risk of infection. Anyone been through something similar? Down to 2.5 mg and it’s getting tough! The muscles around my knees are so tight and getting worse. Can’t work out if this is the PMR or arthritis. Any thoughts?

Thank you. Romi, from New Zealand

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Hi Romi,

Nice to hear from you.

There are a few on here who have had operations (of various forms) without having to get down to zero. In fact some surgeons have suggested they increase their dose for a couple of days around the operation date, so not sure why you have been told to reduce to zero, unless you have anything else going on.

Hopefully those been through ops can give you some info to pass on to medical team and you can discuss situation.

As for you knee pains, could be either. I found my arthritic pains came back with vengeance when I got to low doses if Pred.

Good luck with op!

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Thanks - that’s helpful.

Romi

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Hi Romicurl

Sorry to hear your suffering with reducing the Pred, some Doctors are very keen for us to reduce as they are concerned about slow healing.

There are times when reducing is not an option as the surgery is urgent. Do you have a date for your Surgery yet or are they waiting until you’re off the Steroids?

Best of Luck 🍀

Mrs N 💅🏼

PS

It may be worth ringing your Consultants Secretary to explain how you are feeling as he may offer some options for pain relief for your knees. How long have you had PMR & been on Pred?

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Thank you. Yes I will do that.

I’ve had PMR for nearly 3 years and on prednisone for just a bit less. I resisted it in the beginning

Have been on 5mg for a long time.

Romi

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Hi Again Romi

Definitely think you need some Pain Meds for your knees & only decrease now by 0.5mg at a time.

Make yourself a chart & see what’s possible in the time available. I’m sure you’ll be glad to have your surgery. Also mention to your anaesthetist you’ve been on Steroids & for how long, so he’s aware.

I note you are from New Zealand 🇳🇿 we’ve just been the once on a Cruise but it is one of the most outstanding trips we have ever been on! We Loved It!

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Thank you. Yes I’m using a chart and reducing by a half each week. But yeah I think I need clearer advice from the hospital I’m going to.

Good to get confirmation. Thanks.

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Hi - along with others on the forum I have had both hips replaced. Beforehand I was on 15mg, having reduced from 80, and my surgeon asked me to reduce to 10. By the time of the op I had got to 12mg, but he went ahead anyway, saying a couple of mg would make no difference.

Hope this helps.

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Thanks, yes that’s really helpful.

Romi

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Hi RomiCurl

I had my hip replacement when I was at 7.5 mg. Everything went very well. Best wishes

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Surely it is up to the surgeon, or was it the surgeon who said go to zero? I e seen people have hip ops on 10-15mg. Also, what about those who have to have Pred for life due to adrenal insufficiency? Do they never get an op? Also, I would want to ask how they can guarantee your adrenals have had enough time to work fully to cope with the stress of the op and not cause a crisis. It can take a year for them to recover.

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Hi Romi, my surgeon said he wanted me at zero for a hip op. I said that was not possible and in the end we negotiated on 5mg. They do not like it if you are on steroids as it is easier to get infection which can be catastrophic with hips and probably knees too also steroids slow down the healing process. Some surgeons are more paranoid than others, but I can understand their worries to a certain extent.

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Hi RomiCurl

This has been my experience:

Not sure about coming off Prednisolone - I've had two major surgeries and 4 smaller procedures during my 4 years on Prednisolone and each time I was given IV top-up of steroids and antibiotics before and after surgery and had no bad side effects or infections.

A month ago I had another procedure without top-up as Consultant felt I didn't need anything being on such a low dose now (3mg). He was wrong, I suffered an apparent flare the following day and had to increase pred by 2mg. If I were you I would certainly discuss with your Surgeon and Anaesthetist.

Regarding whether it's PMR or OA, I am currently having the same discussion with my Rheumy as I have OA in my upper body - hands wrists elbows shoulders and neck - the juries still out at the moment I'm afraid and think it's something that cannot be diagnosed that easily, I now have knee problems that have only appeared since my current flare after increasing pred, they are on fire and legs feel very stiff...where will it all end..

All the best Romi and good luck with the surgery.

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Thanks, that’s helpful. Have been told by the hospital today that it will be ok to stay on 2.5mg til surgery. Will keep in mind what you’ve said though.

And yes I have the really stiff leg muscles too. Can’t sit for too long without everything seizing up. I hope the op will help that.

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Hope so too, let us know how you get on won't you

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Hi Telian, a flare after surgery seems quite common. I had one after my hip op. My CRP went up to 415 which meant I was stuck in hospital a couple of extra days.

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Goodness that was high piglette...

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I was a bit shocked too!!

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They did bash the tissue around the knee about a bit - no wonder the CRP went up in the short term!

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I am still having trouble with CRP. It went up from 29 to 40 recently, my new GP who is supposed to be the best in the practice (not saying much) wrote satisfactory on my notes and no need to do anything! My old GP has left thank goodness. I phoned up and he said have another blood test, it has now gone up to 85. He did think that was a bit high and has suggested I should make an appointment. All they do is say take more pred and have another blood test.

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Hmmm - do they know the difference between CRP and ESR?

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ESR is 105! According to our wonderful new on line computer system anyway. The truth is they haven’t got a clue!!

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Hi again,

Forgot to say

I’m due for TKR in the not so distant future, no date as yet!

Whereabouts in NZ do you live? My daughter lives on South Island and I spent December to February over there. Lovely country!

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We live tn Thames on the Coromandel Peninsula. I run an Op Shop in the old dining room of a heritage hotel.

Hope you get your surgery soon.

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Never got to the Coromandel this time around, did have a few days in Auckland with another couple of members on this forum. Also went to Lake Taupo, Whanganui & surrounds - have got a cousin who lives there. Maybe next time!

Take care.

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yes be sure to come and visit next time.

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Hi Romi I am coming to New Zealand in September so I could call in for a cup of tea and we can compare scars. Seriously though I had my hip done last September. I did the same thing reducing steroids for fear of problems but stopped at 5mg. Was fine on that I personally don’t think you have to stop. The focus was on me getting mobile after the hip op so PMR was masked a bit by morphine and other pain. As I was house bound I didn’t notice the fatigue as much either. Now my hip is much better I have had a flare up and I’m back on 20mg. Such fun being a wrinklee!! But there were no issues with the op. It took longer to fix and the bones as the deterioration meant I had more bolts in. Did have to wait a year for the op though. Stick at what your comfortable with don’t add to your discomfort with additional pain you can do without.

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Thanks. That’s good to know. The hospital has told me I can just stay on 2.5 so that’s good. I didn’t have to wait too long. I’m grateful to live in a country where the op is free without health insurance. Must be awful for those in the US.

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I am in UK. It’s free but it’s the waiting due to demand. They give us drugs to live longer then there’s no beds in homes for when old people need care so hospitals take the brunt. I could have had it done privately and quickly for £13,000 or gone to Latvia and had a week in a Spa after to recover for £4,000 but I chose to travel once fit enough and struggle through. Matter of principle really. Bit like cutting off your nose to spite your face but more expensive?? When you’ve paid mandatory National Insurance contributions for 40 years it’s a state responsibility not mine using up hard earned cash. Good luck with your op you will feel so much better. It’s six months for me and I am forgetting the crutches and pain in bed moving already. If it were not for the PMR I would be swinging from the tree tops 🤣🤣🤣🤣

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You absolutely DO NOT have to get to zero - it is a figure that depends on the surgeon. Some years ago a lady in the UK with PMR was told that and was struggling to get below 20mg at the time. I told her to write to various surgeons and she almost immediately found one locally who was perfectly happy to do it at 10mg - which she achieved using the DSNS approach. And was able to reduce the pred dose steadily post-op - it was as if the op had removed a stressor for the PMR.

Many people HAVE to be operated on while taking pred, there is no choice. And there is no point reducing your pred dose to a level where you are immobile when you have to do the rehab post op. And having reduced relatively rapidly before the surgery it leaves you at an increased risk of an adrenal crisis as a result of the surgery.

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