PMR Relapse after operation?

[Delonghi]

I previously had PMR and took prednisolone between September 2018 and July 2021. I have not had to take prednisolone since July 2021. I was basically affected round the hips/lumbar region.

I have in the last 15 months had 3 operations for lumbar decompression, the last one on the 14 June 2024. I was then re-admitted to hospital for a major leak of spinal fluid on the 18 June. The wound from the operation was further stitched and a pressure dressing was applied. I was discharged again on the 18 June after no further leaks but I noticed increased pain levels in the last 2 days in hospital

When I was discharged, I mentioned that the pain symptoms etc were similar to the one I had when suffering from PMR but this was dismissed.

Since coming home I am becoming more convinced that I am suffering with a relapse of PMR. Pain around the lumbar/hips region - difficulty of turning over in bed or getting out of bed. Pain when going from sitting to standing. Not very steady when walking. It is difficult to be sure as my lumbar region is battered from all the medical procedures I have had in this area.

I am 75 years old - male. I was given 30mg Codeine and 500mg tablets of Paracetamol when discharged but they seem to have very little affect on the pain levels.

Has anyone had a similar experience or any opinion on whether this could be a recurrence of PMR. The first time I had PMR I thought it was due to a medical procedure in the week leading up to the start of PMR but I guess you never really know.

[DorsetLady PMRGCAuk volunteer]

As we often say, and Prof Sarah Mackie confirmed in her webinar recently- PMR can be triggered by many things, including an operation.

So would say as painkillers aren’t helping then it’s very likely you have a reoccurrence of PMR…sorry.

Think you need a GP appointment and at a least a trial of Pred to see if they help. Then you may have your answer - and don’t let GP dismiss your concerns as they were previously- you know the difference between post operation and PMR pains.

Please let us know how you get on.

[PMRpro Ambassador]

Sorry to see you back - what a performance you have had.

Whatever "they" may think - I think it is perfectly possible. Even without the operation stress, a relapse of PMR is always on the cards once you have had it once. That tendency remains life-long - thank goodness the symptoms go aware for a time fore most!

Take away the effects of the op, what you describe is fairly typical isn't it? And the post-op soreness should be improving slowly. But you noticed it after a few days - is it worsening or just spreading - if you see the difference? No reason the spinal stuff should cause things that are more PMR-like is there? Could you turn over after the op?

[Delonghi in reply to PMRpro]

Thanks for your help. There's been that many things going on but immediately after the Op I think that I could turn over without too much trouble in bed. It was just very sore around the wound area. You then start thinking have you gone downhill because of the massive spinal fluid leak but all the symptoms remind me of PMR the first time round and as you say not sure why the leak would have this kind of effect.

[PMRpro Ambassador in reply to Delonghi]

Sounds very PMR-ish to me ... Sorry.

[Kritterkid]

Hi Delonghi,

So sorry to read about your issues. I am back today with a similar story. On Pred from 2018 to 2020 and then clear. Smushed my toes when the trailer tongue fell on my toes and broke one this April 2024. Now my wrists, arms, shoulders and hips have that familiar weakness, pain and Ugh I am sure it is PMR again. Starts in the middle of the night with great difficulty turning in bed, but by afternoon I can kind of move without issue. Then it starts over.

This time, however, I know to be very gentle and am going to get those blood tests (CReactive Protein and I have to look up that other one!). That will be the determining diagnosis.

All the best

[DorsetLady PMRGCAuk volunteer in reply to Kritterkid]

ESR - Erythrocyte sedimentation rate.

And not necessarily the determining factors - in conjunction with symptoms.

[Kritterkid in reply to DorsetLady]

Right, I sounded too 'determined'!

[Hirwaen]

This sounds exactly the same thing as seems to be happening to me! I had a hip replacement 6mths ago, recovered from it really well but in the last 2 months I see to be going backwards . Difficulty turning in bed, pain across hips when standing from lying or sitting, all the old stuff that I had before. I have been on 2 mgs for at least 7/8 months so will be very disappointed if I have to up my dose. I will listen to all the good advice given to you. Good luck!

[DorsetLady PMRGCAuk volunteer in reply to Hirwaen]

To be honest, you might be disappointed, but no point in being in pain.. maybe try the flare protocol and see if that helps [in attached link] - and maybe back to 2.5mg or 3mg rather than 2mg.

healthunlocked.com/pmrgcauk...

Let us know if it helps...

[PMRpro Ambassador in reply to Hirwaen]

Like DL - I suspect the 2mg is marginally too low and the tiny bit of left-over inflammation each day has built up over time. Or could try the flare protocol and go back to 2mg with 3mg once a week?????

[Delonghi in reply to PMRpro]

Thanks for your advice and DL's. It makes a real difference to my mindset and I was not aware of the flare protocol. I thought I would have to start all over again and try and reduce down over the years. I am not sure what I have done to deserve this but I now have a sore throat and a cough (not Covid). When you cough the pain is unbearable. I am seeing the consultant tomorrow morning and dependent on what he advises I will contact my GP for some prednisolone and try the flare protocol first of all. Your knowledge on PMR is top class and you are both so helpful. Thanks once again.

[DorsetLady PMRGCAuk volunteer in reply to Delonghi]

If you have a virus [and why are you sure it isn't Covid.. is does seem to be very active again] an increase in Pred as per Sick Day Rules may help that anyway.

[Delonghi in reply to DorsetLady]

I have done a Covid Test which is negative. No Pred in the house at present but will get some tomorrow.

[DorsetLady PMRGCAuk volunteer in reply to Delonghi]

Shouldn’t bank on the test -they don’t seem all that reliable nowadays. … many seem to have to test a few times. How long have they been in the cupboard -or are they new supply?

[PMRpro Ambassador in reply to Delonghi]

Don't take that as gospel - my nurse daughter has had to test several times for a positive even though her symptoms were identical to her partner's and he was positive much sooner!

[Hirwaen in reply to PMRpro]

Thankyou both for your welcome advice. I will up my dose by 5 mgs and hope for some improvement. Just for a fortnight though, I don’t want to end up back where I started!!🤞🥰

[Delonghi]

It is about 12 months old. I'll get hold of a more up to date test today.