PMR AND OPERATIONS!

[66Mac]

Thanks everyone for all the replies to my last post ,I'm starting to realise that PMR does change everything.

Just back from my walking holiday around lake como in Italy ,with my PMR buddy , luckily only managed to miss two days due to fatigue so a good result really . Beautiful place.

I have done really well down at the 5 mg level of pred so the doctor is leaving it at that for the next three months to see how I go , i have got to go and have a prostrate re- section operation next week which is classed as quite a big op and I'm just wondering what effect will an operation have on my PMR ? Any information or tips would be greatly appreciated.

Thank you

[PMRpro Ambassador]

It may well make it flare - stress of any sort and PMR don't settle well together. Your surgeon will probably want to give a bit extra pred during surgery and post-op as you are into the realms where your adrenal glands have to provide a top-up - so don't forget to tell everyone in the team and make sure it is documented. But if you DO get symptoms - don't ignore them!!

[66Mac in reply to PMRpro]

Thanks for that PMRpro , that was what was in my mind the flare up scenario. Just hope it isn't as bad as when I had the diagnosis otherwise I might have to be in hospital longer . Nightmare !

[Estellemac]

Hi 66Mac

I am due to have my hip replaced. My surgeon was concerned about infection due to low immune system. If the implant site gets infected It will mean it has to be taken out and done again. He won't do the op if you have something as minor as a fungal nail infection. As long as we are aware and in good health before hand the risks are a bit higher with PMR but not unmanageable. Recovery is usually a bit longer too. If anyone else tells me they know someone who had the hip replacement and they were back at work 6 weeks later I will scream!!! Not understanding PMR is a barrier for most as they don't see all the effects it has on you. I put it all down to Arthritis and getting old. Now I am much more informed. I listen to my body ( more so sometimes than my doctor) Don't worry. Be aware of everything and ask for help or support even if you think it's a minor thing.

[66Mac in reply to Estellemac]

Thanks Estellemac,

Have to agree with you the ignorance of PMR is a major problem ,it's not good having a condition that makes you appear to be normal when you're hurting inside .I always have the same desire to scream when people say what have you got to be stressed about !!!!!!!!!!!!!!!

Hope your op goes well and you recover quickly.

[Estellemac in reply to 66Mac]

Cheers 66Mac one retort I like to offer us "Not all Disabilities are Visible". I do this in calm starey psychotic manner whilst smiling and having a turn inside my head.

[piglette in reply to Estellemac]

A friend with PMR had a hip replacement recently and said it was a walk in the park compared to PMR!

[Patricia157 in reply to Estellemac]

Hi Estellemac

I had my hip replaced in November and having had a lot of pain beforehand I went into theatre feeling total relief that the pain couldn't be as bad. I was much more relaxed about it than I thought I might be.

Yes there is mild discomfort initially but it is nothing to what I experienced before the operation. The only thing you might need to be aware of is that my white blood count was higher than they would normally operate on. Something like a reading of 14 instead of 10 max.

Having asked our lovely experts here I was able to tell the surgeon's secretary when she phoned me that it is normal for this to be the case. After all our bodies are working hard with PMR anyway. The anaesthetist confirmed this and so I had a very successful outcome. I thought I would mention this as even the surgeon was unaware of this. But he did a grand job of the hip anyway!

I wish you all the best.

[Estellemac in reply to Patricia157]

Hi Patricia157

That is really helpful thank you. A good bit of information there to be aware of. I am hoping it's only 6 weeks now. I phone up on Mondays and ask about the waiting list to see if they'll get fed up of me and bring me in to shut me up. Lol!!🌝

[Patricia157 in reply to Estellemac]

Hi Estellemac

I think you are wise to only phone once a week. Any less and they might get annoyed.

I read somewhere that the more relaxed you are before any operation the better the outcome. I don't know whether there is any truth in that but I was almost looking forward to it!

I had a super surgeon and the anaesthetist was gorgeous too. Oh if I was ....years younger! Just as well my OH isn't reading this! He's having forty winks! 😴

[Estellemac in reply to Patricia157]

I am so looking forward to it as weird as that is. I do ponder on bugging them too much. It could go the opposite way. I have confidence in my surgeon. He wouldn't do the op private so I could get in sooner. He wanted to be sure I was fit enough and in the best place if any complications arise.

[isabella2015 in reply to Estellemac]

Estellemac I can understand you looking forward to it, to be out of the hip pain and to get the whole thing over with, such a difference if you trust and fancy (abit) your surgeon! I hope it will all go well for you. Of course relaxation and meditation will help and being positive!xx

[piglette in reply to Estellemac]

Hi Estelle, you are definitely doing the right thing. Have they offered you a date for the pre op yet?

[Estellemac in reply to piglette]

No not yet. I stare at the post box daily. It been too long but the bookings persons says I am on the list. Doesn't help really?

[piglette in reply to Estellemac]

Hi Estelle, do you think it is going through the application for funding application which slows it down? Or had that already been applied for? Horrible waiting for a letter.

[Charlie1boy]

Hi,

Not sure that this is relevant to you, but I have prostate cancer and PMR!

My main problem has been the side effects of the hormone therapy drugs linked to the prednisolone. Both cause hot sweats and "extreme" fatigue. It's been a bit of a double whammy for me!

However, with your op, you may not have the need for hormone therapy?

Anyway, good luck, and I just hope it all goes well for you.

All the best

Paddy

[Estellemac in reply to Charlie1boy]

Hi Paddy

I am on HRT and have to stop that the week before the op and for 4 weeks after. It's to do with blood loss.

[Charlie1boy in reply to Estellemac]

Goodness me!. All these problems. Just hope it all goes well for you without too many side effects.

Best wishes.

Paddy

[Estellemac in reply to Charlie1boy]

Hey Paddy

I hope your sorted soon too. My thoughts are with you. Are you having an op or treating it with Chemo and /Radiotherapy? Either way it's not nice best wishes stay positive best you can.

[Charlie1boy in reply to Estellemac]

Yes, radiotherapy, and three years of injections every three months!.

The best I can say is that it seems to be working, even though I feel permanently tired/ exhausted. And, the PMR is still there!!

Thanks for your thoughts.

Paddy

[30048]

Just wanted to recommend a book by Peggy Huddleston called " Preparing for Surgery" which had tapes of relaxation exercises to do daily . I found that it was a great help. Your state of mind going in is so important

[66Mac]

Hi Everyone,

Well 5 weeks post op from the prostrate re bore and everything went well , certainly not in my top ten of enjoyable things to do in life though !!!!!!!!!!

Same old same old though the anethatist didnt actually know what PMR was , worrying to say I'd already explained it to her pre op, so I think she just gave me a dose of pred as a precaution .

Had a small flare up post op but was determined to come home and leave hospital to the people who really need it , so back to the 5 mg and seem to be ok so far . Just hope this PMR thing decides it's not going to stop with me too long !!

66Mac