flare after surgery

[Nightingales]

Good morning. Here I am turning to you all again. I am really struggling after my THR. I am 5 days post op and I think I am having a flare. My Orthopedic surgeon warned me that I might have a more difficult recovery. He seems to know more than my rheumatologist about PMR! He gave me a steroid boost during surgery to try to prevent a flare but I think it’s worn off. I am on 15mg having struggled for 8 years with relapses. Consequently, I have Avascular Necrosis caused by the Prednisolone. The pain in my ribs, shoulders, and scapula is worse than the surgical hip pain and not helped by the Oxycodeine they told me to take regularly. I can’t sleep or relax. I don’t have any signs of blood clots or respiratory complications. So my quandary is that I have felt this many times before and I know I need more prednisolone but I know it increases the risk of infection and I have to get off it asap. My wound looks great and I able to ambulate and do the exercises well. But I feel so miserable with the pain. Do you think I can take an extra 2.5 or 5 for a few days then go back to 15? Thanks in advance x

[BonnieMagic]

so sorry you’re suffering. Can you contact your surgeon via his secretary as he is likely to be concerned about anything that might impact on your surgical recovery? If he is as knowledgeable as you think he might be your best ally in this. Good luck

[Nightingales in reply to BonnieMagic]

Thanks Bonnie. That’s a good idea. I am so used to sorting out my PMR treatment myself because my rheumatologist is pretty hopeless.

[suzy1959]

I have had 4 joint replacements and had a flare after each surgery.

They are quite a stress on the body. I recovered from the ops very well apart from that- no infections etc. despite being on pred for 10years, usually at above 10 mgs. It is good news that your wound looks good and that you are up and about. The trouble is that if you don’t treat the flare, it will only get worse and worrying about the consequences of more pred adds to your stress which makes things worse too!

I don’t want to advise you one way or the other because we are all individuals, so can only share my experiences with you . We all have to make our own decisions because nothing is guaranteed, I’m sorry to say.

[Nightingales in reply to suzy1959]

Thank you so much Susie. It’s good to hear your similar experience. It’s such a difficult decision.

[SnazzyD]

When did this start in relation to surgery? Just wondering if you have been pulled while unconscious to get you into position. When you are awake and a joint is pulled, you naturally guard your joints by putting up a bit of resistance . When you are completely floppy one doesn’t and over stretching can occur especially all those little muscles and ligaments. Having this condition/Pred puts us at even more risk and someone pulling your arm or it flopping off the table might be more of an issue than normal. Manual handling should be done with care for this reason, but sometimes people are hoiked more than they should be. I’ve seen it happen. Might not be it but worth considering.

[Nightingales in reply to SnazzyD]

I had a spinal and had severe shoulder, neck and rib pain in recovery. They gave me pain med before I got back to the room. I think it’s partially the reason because I have DDD as well but I thought it would be easing up be now but it’s that deep awful aching that you get when PMR is in full swing.

[DorsetLady PMRGCAuk volunteer]

Agree with others -it’s a bit of a Catch 22 situation -you could do with extra Pred for your PMR-but it may impact on recovery. So try surgeon for advice . ..and good luck with recovery.

[Nightingales]

Thank you!

[PMRpro Ambassador]

I know you want to get off pred asap - BUT as long as the PMR is active you are in need of enough pred to manage it and without enough pred it will just get worse as the inflammation mounts up and that will stop the essential rehab. You will have to find a balance.

Unfortunately, the UK is being a bit unhelpful about medication for those of us with this sort of PMR. I have it too, have had it for over 18 years and been on pred for nearly 14 of them, I have got down to 7mg after a year on Actemra - if I were to return to the UK that option would be removed.

[Nightingales in reply to PMRpro]

oh you are so right. I have tried two of the DMARDS but was tolerating Leflunomide only every other day because of raised LFTs. I asked my rheumatologist if I failed three woukd they consider Actemra but no chance. And I have severe flares with very high ESR and CRP. It’s just scary when you see your femur rotting away on MRI and the doc says it will affect other joints.

[SheffieldJane]

This has to be a question for your knowledgeable surgeon. They will know if there are risks involved in your taking a sick day dose for instance.

[Nightingales in reply to SheffieldJane]

Thank you Sheffield Jane. I feel a bit better today but have an email in to his secretary. Thanks again.

[Nightingales in reply to Nightingales]

I am glad I followed your advice. He increased my pred by 2.5 for three days then reduce by 1 mg a day. Back to previous dose of 15. It’s amazing how much difference this has made. The post op pain is still pretty bad but it is clear that is what it is. My poor body has a lot to contend with. We are waiting for a call from the vet to come to euthanise our adored dog, my brother and my good friend died suddenly a week ago. What a week. Thank you for being there. x

[PMRpro Ambassador in reply to Nightingales]

Hugs

[tempusfugi in reply to Nightingales]

Multiple hugs from me, too. Am so pleased that you are feeling a difference.

[piglette]

I had a bad flare after my hip op and my ESR went up to 412. The surgeon increased my pred by around 5mg.

[Nightingales in reply to piglette]

I hope it went well after Piglet.It’s not surprising it’s quite an assault on the body.