Confused

[jaycee444]

Started on Prednisolone 15mg May 2019 after PMR diagnosis. 15mg worked like magic and had been reducing. Recently had a GCA scare resulting in 40mg Prednisolone whilst tests were being done. All seems well on the GCA front and had only been on the 40mg for 6 days so was told to reduce by 5mg per week back down to 15mg (and next hospital appointment)

Have this week reached 25 mg but after a couple of days have had some breakthrough shoulder and hip pain which I find confusing as I was originally fine on 15mg and 25 mg is a lot for PMR?

Not sure what is happening. Cant think that Ive overdone things in any way and as the pain is bi-lateral ???? The pain is not bad but definately there so its a worry.

Could this be just be an effect of lowering the Prednisolone?

Any advice would be appreciated.

[PMRpro Ambassador]

On what grounds did they rule out GCA? My immediate thought is that the underlying cause of the PMR symptoms has ramped up - and that is something that can happen in GCA. I think you could have reduced quicker as you had only been at the high dose for a few days but this sort of reduction could be the cause of the discomfort. Have you tried some paracetamol? That often helps the discomfort you sometimes get when reducing the dose so it is worth trying.

[jaycee444 in reply to PMRpro]

Had temporal ultrasound and in depth eye examinations at the hospital.

Will try Paracetamol. As I say - the pain isnt too bad its just a concern that its crept in.

[PMRpro Ambassador in reply to jaycee444]

GCA doesn't only affect the temporal artery and the eyes, it can also affect other arteries and sometimes it doesn't affect the temporal artery at all. Have you had blood tests for ESR and CRP? Are they raised? Have you any other symptoms besides the PMR-type ones?

[jaycee444 in reply to PMRpro]

All inflammatory markers were normal but have been all the way along. Was getting some jaw discomfort at times when eating and occasional temporal pain so my GP fast tracked me to ‘be on the safe side’

[PMRpro Ambassador in reply to jaycee444]

I think your GP may well have been right. It is difficult to diagnose - especially when your "markers" are normal. Have they varied at all? Just because they are under the suggested "normal range" doesn't mean that they aren't raised for you,

[DorsetLady PMRGCAuk volunteer]

“All seems well on the GCA front” - what exactly do you mean by that?

My guess is, following the reaction from reduction - that maybe it’s not all well. Certainly need to be at a higher dose than 15mg if it is GCA.

Reducing 5mg a week is hard anyway, but as PMRpro suggests it maybe be steroid withdrawal and therefore paracetamol may help.

However if that does not help you may need to think about going back up to 20mg or 25mg perhaps.

[jaycee444 in reply to DorsetLady]

I am on 25 mg at the moment as explained in my post

[DorsetLady PMRGCAuk volunteer in reply to jaycee444]

Sorry - typo! Meant 30mg or 35mg!

Obviously 25mg is not enough - which indicates GCA not “just” PMR.

[MavisEllen]

Hi Jaycee444, I have GCA diagnosed in February 2017 and have been on fluctuating doses of prednisolone ever since. The headache never really goes completely. A few months ago I was referred to a geriatrician as well as my rheumatology consultant and she diagnosed me with PMR as I am experiencing severe continuous pain in my shoulders, right one worse than the left. I am surprised that you have been coming down 5mg a week as when I have had my dose raised because of raised ESR etc., I have been advised to only reduce by 5mg a month. I do understand your concerns regarding pain creeping in and I do think that you need to have a raise in your prednisolone dose until it is under control. I am at present on 5mg daily and have been told that due to how I have been when I reduce to lower doses, I once got down to 3mg the Dr. thinks I should stay on 5mg for the rest of my life. The damage done by the steroids is done and hopefully will not get worse . It is possible that withdrawal especially a little too fast might be the underlying reason for your pain. However, I also think that you can't rule out the possibility of your having GCA completely. It really is an insidious disease. I hope that you get some better control soon. I am hoping that my headache is going to subside before Christmas. My ESR was 14 two weeks ago and so the consultant wouldn't increase my pred. dose but I have had the headache from hell for twenty days now. By the way after I reached 5mg last time I was advised to only reduce by one mg a month but became really unwell when I reached 3mg. Best wishes for an improvement. MavisEllen

[jaycee444 in reply to MavisEllen]

Thank you so much for your reply. Very informative. I do think the problem for me at present is the quick reduction though I did fully intend to slow it right down when I hit 15 mg which was my original starting dose for PMR. I do hope that you start to feel a bit better before Christmas. It’s such a hectic time of year and you can do without feeling so rotten with everything that’s going on. I have another Rheumie appointment first week in January so hopefully will get more answers then. Kind regards.