Concerned about pred level: Had PMR 4 1/2 years... - PMRGCAuk

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Concerned about pred level

Fimckenz
Fimckenz

Had PMR 4 1/2 years, got down to 1mg every other day. Approx 11 weeks ago woke in the night with really sore base of skull, in the morning very painful to turn my head, felt so tight and the pains would move over my head during the day. After a few weeks went to the doc as it was not improving, she referred me for an MRI. In the meantime old pains were returning but I was unsure what to do so waited for mri results. All clear apart from some wear and tear around my neck. Had a good discussion with the doc and she agreed it all could be related to a

PMR flare, albeit a severe one. She has put me on 15mg and said 2 weeks then start reducing. I actually think this is too long/much? What is the general consensus for a flare after being on such a low dose? I have so far had 2 days on 15mg and the pains have eased a lot (though my head has been bad today and very light headed).

11 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

Normal recommendation is usually to add 5mg to the dose that you last felt symptom free to clear out the accumulated inflammation

But I guess because of the inclusion of head pains and the length of time you’ve had symptoms your doctor is concerned that a dose of say 7.5mg or so is not enough especially in view that it may be a new case of GCA rather than just PMR.

I can understand that you don’t want to go up to 15mg again after almost being off steroids, but if it is GCA rather than PMR it’s not worth taking the risk.

If things go according to plan you may find you are able to reduce quite quickly back down to between 5-7.5mg without much problem - but only time will tell.

PMRpro
PMRproAmbassador

I have to confess that had I been your GP I'd have been tempted to go higher and for longer. Those symptoms are far too suggestive of potential GCA for it to be messed about with. There are no time limits for PMR to turn into GCA. I wouldn't even be thinking of reducing until your symptoms are all under control.

Fimckenz
Fimckenz in reply to PMRpro

GCA was never mentioned. The gp is one of many at the practise and seemed open to My suggestion that my pains could be PMR related. I doubt she would have considered it otherwise. As I struggle with vision problems due to a detached retina a few years ago, I cannot identify any vision problems. Should I go back to the gp and discuss GCA?

SnazzyD
SnazzyD in reply to Fimckenz

Are you still getting this type of pain most days? I would certainly suggest GCA even if it turns out to be other skeletal causes because it gets it on the radar. Many GP’s have never seen GCA. One of my GCA’s main early symptoms were waking with a burning headache in the skull at the back of my head. At first it went quickly on getting up but latterly it didn’t and crept over my head and stayed there, especially my temples. Eyesight issue were a very late sign and accelerated in the last couple of hours before diagnosis. If this is a GCA symptom you need more than 15mg.

Fimckenz
Fimckenz in reply to SnazzyD

The pains have definitely eased - a lot. Had bad head through the night last night, more of a dull aching. Sudden movements and bending over is uncomfortable?

SnazzyD
SnazzyD in reply to Fimckenz

Hmm, still worth getting this checked out. If it is GCA you may need a higher dose still, some people do.

Orpheus82
Orpheus82 in reply to Fimckenz

I think that would be very sensible. As PMR pro said there isn’t a time limit for GCA to occur and it may not be the case but it would be wise to investigate further. Was your detachment in one eye? If so you need to take great care of the other eye. Are you due to see an optometrist or ophthalmologist?

Fimckenz
Fimckenz in reply to Orpheus82

I see my optician regularly who is very thorough. My detachment was in one eye, no reason, possibly down to the cataract I had done in that eye 15 months previously. Unfortunately the hospital did not get me in quick enough so I had to have a general to reattach and they were unable to reattach it completely flat hence slight double skewed vision in that eye ever since. This was over a year prior to my PMR.

PMRpro
PMRproAmbassador in reply to Fimckenz

Technically they are PMR-related - PMR and GCA are the same, just at different points on a spectrum. It is the description of occipital heachache that worries me - and far too many doctors aren't aware of that, some even saying it is "the wrong sort of headache"!

I echo the others in urging you to be checked out for GCA. Your description of the pain during the night and on waking sounds just like the GCA symptoms that I experienced. In my case I got GCA and PMR within a month of each other but, as this forum shows, we vary wildly in how we are affected. Good luck and make sure you sort this out soon.

So it is theoretically feasible that these pains that started 11 weeks ago could be GCA?

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