pain relief expectations on 20 Mg Steroids for PMR

[Leafsong66]

Hi everyone,

I continue the saga of COVID and PMR ( possible diagnosis).

Due to my PMR symptoms ( started abruptly 15/12/24) and then a flu like illness on 24/12/24 and then a postive PCR for COVID on the 10/1/25 I have been taking variously 10;then 15 and for the last three days (on Rheummies phone advice ) 20 mg. The dose has now been split between 8 am and 8 Pm.

I am still having significant, disabling pain and stiffness each day despite these increased doses. It has a peak about two hours before the Pred is due. The mornings are still much worse than the evening.

My Rheumie who I will travel to Cairns to see tomorrow, thinks that three days on 20 will be better stuffiest and I can drop to 15 for a week and then til 10 for a few weeks and then back to 5 mg which was my GCA tapered dose when this all kicked off.

I am still very debilitated from COVID, have no energy or stamina breath wise. I know Rheumie is keen for me to avoid the steroid myopathy etc from my previous experience with 60 mg of GCA dosage. But he doesn’t seem to think that I have PMR and is blaming it all on COVID.

He has though arranged a few weeks ago for me to have a PET-CT which came through the hospital and is booked for this Tuesday.

When I see the Rheumie tomorrow is it fair enough for me to say that I don’t think my symptoms are managed sufficiently on the 20 let alone dropping back to 15 which I am due to do tomorrow. Do others get better pain relief whilst on these doses? Or do you have to put up with a bad period once or twice a day? Thank you so much for your help.

[DorsetLady PMRGCAuk volunteer]

If it’s PMR then one would expect 20mg to make some difference but maybe not within 3 days .

As is only a “possible” diagnosis, then maybe it’s isn’t all down to that _ and Rheumy is correct.

Who suggested splitting dose? taking the full dose in one go in the morning might give a better result [if it is PMR].. or didn’t that work either?

[Leafsong66 in reply to DorsetLady]

Thanks Dorset Lady. I suggested the split dose to which he readily agreeded, because we had discovered after two weeks of PMR Symptoms that were horribly waking me at 2 am that a 8 pm dose got me at least to not have them wake me up. So when the dose was raised with sick day rules , I didn’t want to take all the Pred before trying to sleep.

Perhaps the PET CT will give more information?

[DorsetLady PMRGCAuk volunteer in reply to Leafsong66]

Okay… you’ll have to see…but with a higher dose it might last 24 hours and you won’t have that problem. But as we always say you have to do what suits you best.

Hopefully the PET CT will give you answers.

[Leafsong66 in reply to DorsetLady]

Thank you so much. So it’s not too much to ask to not have this disabling pain each day?

[DorsetLady PMRGCAuk volunteer in reply to Leafsong66]

You shouldn’t have debilitating pain… but if you don’t have a positive diagnosis of PMR - you don’t really want to take more Pred if it’s not working.

Stick with the 20mg for now and see what happens over the next few days…

[PMRpro Ambassador]

A major problem though is that a PET-CT won't show the full story if you are on 20mg of pred - or at least, you cannot know that lack of signs of inflammation are because there is none or whether the signal is being suppressed by the pred. I had to taper my pred to well under 10mg for the radiologist to be happy. It still didn't show much despite the symptoms.

[Leafsong66 in reply to PMRpro]

It’s tricky isn’t it? I know my CRP has come back to 48 even though I have been on 15-20 for some weeks. I did tell the PET CT place that I was on steroids but there was no question of what dose. Thanks for your input dear PMR pro.

[PMRpro Ambassador in reply to Leafsong66]

In theory, if you are showing oodles of inflammation it must show up. You'd hope.

[Leafsong66 in reply to PMRpro]

That makes sense!