PMR and CK

[Cobalt2sister]

I have GCA but am now off prednisone completely. However, am now having pain: shoulder, knees, thighs. Rheumy watching and sorting out PMR vs. medication induced ( from zetia a non statin cholesterol medication known to cause muscle pain) ( I had to go off statins because of severe muscle pain and elevated.CK. ( creatine kinase blood test which shows muscle damage).My CK is only mildly elevated now. It is said that CK is NOT elevated with PMR.

My question: has anyone had mildly elevated CK with their PMR?

Because it does seem possible my pain might be PMR. Any comments appreciated. Haven't posted in long time but I read posts from you fine folks daily. Thanks.

[piglette]

It is possible that you now have PMR. If you can try steroids, say 15mg, for a week and see if things improve.

[Cobalt2sister in reply to piglette]

Thanks for reply and yeah, interesting suggestion.

[PMRpro Ambassador]

Raised CK is a differential test for PMR - raised CK means it isn't PMR, But you can have PMR as well as something else.

I'm on ezetimibe/Zetia for cholesterol too as I can't take statins and have no problems with it at all. How long have you been off statins? It takes about 3 months for the damage to stop in most cases but a 2018 study found in some people the damage persists.

[Cobalt2sister in reply to PMRpro]

Hi. Thanks for reply. I'm off statins 3 months. I see rheumy Aug 1st and will also see if they redo CK and if its gone up higher ( it had gone up higher when I was on statins.) Glad you're doing well on zetia. They do say you can get pain with that too.

[Ridge]

Yes! Raised CK and LDH and AST. I thought that AST was to do with liver but according to my Rheumatologist all three are to do with muscles. I did ask him when does AST refer to muscles and when does it refer to Liver. I got a complicated reply but basically when in conjunction with other enzymes ie the CK and LDH and basically not Liver as ALT is normal!

I have given up trying to understand this and just accepted it as part of PMRGCA. While the above were raised the CRP and ESR are/were normal?

Oh dear. Maybe I should be concerned. I am seeing the Rheumatologist in a couple of weeks so PMRpro are there questions I should ask him?

[PMRpro Ambassador in reply to Ridge]

pubmed.ncbi.nlm.nih.gov/320...

ncbi.nlm.nih.gov/pmc/articl...

uptodate.com/contents/clini...

indicate 2 things relevant to you - 1) if your LDK and AST are raised in PMR, you need more pred and 2) if your CK is raised, it isn't due to PMR.

Are you on a statin? Drink a lot of alcohol? Strenuous exercise or muscle injury?

urmc.rochester.edu/encyclop....

[Ridge in reply to PMRpro]

Thank you. Food for thought. This time last year I was tested for myositis. The BT was negative although AST CK and LDH were elevated. I think in hind sight I had been racing for the bottom and had a flare. I also had thigh Claudication while walking. I was a mess really and then I joined this site and understood so much more. I increased prednisolone with Rheumy’s approval and things improved. Afib joined the complaints though.

Again in hindsight I think everything changed after an allergic reaction to Trimethoprim. I had had a year of antibiotics for a tooth abscess, paronychia with tracking and finally a UTI while I had Covid. The GP who I no longer see, the one who failed to diagnose PMRGCA sent me a double dose of Trimethoprim which didn’t work inspite of a three day course of Nitrofirantoin working but UTI returning. I felt so ill I didn’t care. Blisters all over my face. Rash on my legs and a very high temperature. It all happened during storm Eustace! So I didn’t go to A & E. I managed to get to see new GP three days later who said I was allergic to Trimethoprim still had the UTI. He sorted it. About a month later BT showed high AST I had the leg muscle problems and CK, LDH were elevated. No doctor has laid it at the door of the allergy but……?

I have high cholesterol but I am not on statins as good cholesterol is high I did like a glass of wine very regularly during Covid and used to feel a bit guilty about days off but I have never been a heavy drinker. Now I am convinced alcohol plays a part in Afib so I don’t drink apart from an occasional quarter glass at a birthday toast etc. Strenuous exercise? What is that ?

I have had PMR with GCA at the beginning for 4 years now. I aged overnight. I have forgotten what it is like to feel fit and active. I have put on weight probably more than it measures as I have lost muscle. The PMR flares every time I have a Covid jab. This summer is the longest I have felt well for. I bypassed the last spring booster.

I am concerned about my heart. I never had Afib or Ectopic until steroids . BP was normal until then. I aim to get off them asap but with your help sensibly. I am down to 4.5mg with today the last of 5mg .

I see the Rheumatologist in a couple of weeks and have a DEXA scan. I shall see what he says. I have asked whether the elevated tests refer to heart and he said no. I am not sure now where the markers are but he will take a BT . And so we go on!

But things are not so bad here I read and feel for those that are having a tough time. I am so impressed at the courage of so many. And I am very very grateful for this site.

[PMRpro Ambassador in reply to Ridge]

Alcohol and a.fib depends on the person. It doesn't seem to make a lot of difference to me but I know it is a common link. Same with pred, though I think for most the pred is probably just making an existing problem worse. A.fib is more common alongside PMR.

[Ridge in reply to PMRpro]

Humm. I had PMRGCA for 5 months before steroids. Within two months of Prednisilone I had high BP and ectopics. So I do think things will be better if I can get off the steroids.

Thank you for your knowledge. I pay great heed and keep an open mind.

[PMRpro Ambassador in reply to Ridge]

I'm sure it would be - however, if you have PMR, the usual option for management is steroids and in the UK, the only option, No pred equals a return of the symptoms until it decides to burn out - and mine hadn't done that in the 5 years before diagnosis and as far as I can tell, nor in the 14 years since. The alternative - which is what I have - is appropriate management of the BP and arrythmia.

[Ridge in reply to PMRpro]

I think I put my reply in the wrong place. You have had PMR for nearly 20yrs? Is that right?

[PMRpro Ambassador in reply to Ridge]

It is. It is unusual but it happens. Seems to happen more if the diagnosis is delayed or patients are poorly managed and allowed to flare badly by the inflammation not being controlled properly.

[Ridge in reply to PMRpro]

How come you were undiagnosed for 5yrs?

[PMRpro Ambassador in reply to Ridge]

Because I was relatively young, early 50s, and my blood markers were never out of normal range although they were raised for me. It was bad luck - the one doctor in the practice who would have recognised it with no problem was only part time and on maty leave at least twice in the time so I never saw her. I worked out what it probably was in the end but my usual GP still wasn't confident. I was referred - in those days you didn't wait months and months for an appointment but it wasn't much better, He gave me a 6 week course of pred to get me through a business trip to the US and 6 hours after the first 15mg dose I could move freely and almost pain-free for the first time in years. But he didn't want to listen to that and insisted it was an inflammatory arthritis, another rheumy had announced it was osteoarthritis, she could feel it. Neither conclusion has resulted in any evidence - I have NO problems with my joints, it is all muscles and their attachments. My rheumy here is a world name in the field - he thinks it is PMR.

[Ridge in reply to PMRpro]

What a journey. So did they insist you came off the steroids quickly - thus the mismanagement?

[PMRpro Ambassador in reply to Ridge]

Oh absolutely not - I ignored the rheumy, I would never need to see him again as I was moving to Italy. The different GP in the UK supplied pred for a few years because we were travelling back and forward between the UK and here until I got a bad batch of 5mg enteric coated tables and had to switch to what I could get here. Initially it was methyl prednisolone which was horrible, didn't agree with me at all. and then I was switched to Lodotra, a delayed release form of prednisone which was great. And now I get Actemra - because my rheumy can ...

[Ridge in reply to PMRpro]

’Bad batch of pred’! Can that happen - well obviously it can! What was bad about them ?

[PMRpro Ambassador in reply to Ridge]

Didn't work - large tub of 5mg and a large tub of 2,5mg, if I took the dose using the 5mg it made no difference, If I took the same dose using the 2,5mg or the few older 5mg tablets I had left I was fine. Ergo, the 5mg lot had something different about them. But I needed twice as many of the 2,5mg so they didn't last as long.

[Ridge in reply to PMRpro]

I feel intrusive if I keep asking you questions. Have you thought or perhaps you have done, writing about your PMR journey? Dorothy Bryne did a fascinating article. I think your experiences and increasing knowledge told as your story would be just as interesting and comforting for all us fellow victims.

[PMRpro Ambassador in reply to Ridge]

I spend so much time on the forum it doesn't really leave a lot over for writing! I also participate in research development as a patient partner.

[Ridge in reply to PMRpro]

Yes. I can see that.

[Ridge]

Thank you. Alarming but best to know!

[Ridge]

So you have had PMR for nearly 20yrs?