has my sisters Polymyalgia returned?

[Grey7]

hi, I have GCA, following Polymyalgia, I am worried about my sister who has successfully tapered of prednisone, then after a few months has it returned? she is in complete pain all over can hardly walk, blood test were taken and the inflammatory level was not raised, so the doctor said it wasn’t Polymyalgia and has given her pregabalin and said she has Fybromyalgia, I have my doubts after reading your emails everyday, I was wondering if it is a Polymyalgia flare? she is in desperate pain, thank you any advice would be welcome, Doris H

[piglette]

It is quite possible PMR has returned if she is in so much pain and painkillers are not really helping. She does not have to have raised inflammation markers, some people don’t.

[DorsetLady PMRGCAuk volunteer]

Sounds about the correct timescale for the PMR to resurface…even though her inflammations don’t seem to be affected.

Were hers raised first time around, and how long was she on steroids?

[Grey7 in reply to DorsetLady]

She thinks about 18 months and her inflammation levels were raised when she was diagnosed, she lives in Scotland and I didn’t find out till last week that she was never referred to a rheumatologist, do you think she should go back on prednisone I think she should as painkillers are not helping, and what dose? She really doesn’t want to, but if it’s the only answer, thank you

[PMRpro Ambassador in reply to Grey7]

WE would think she should at least ask to try - 18 months, even 2 years, is a very short time to get off pred altogether. The two year figure is a myth and top experts are trying to bust it as it does many patients no good at all.

[DorsetLady PMRGCAuk volunteer in reply to Grey7]

Sounds like a plan… but the difficulty may be if GP is one that’s stuck on inflammation markers rather than symptoms - and as PMRpro has said 18 months is not long at all.

As discussed in another post earlier and sensible and knowledgeable GP is perfectly able to treat PMR - doesn’t always require a rheumatologist unless she has other health issues - or complex PMR.

[PMRpro Ambassador]

It probably hasn't returned as such if it is only a few months, it never went away. What can happen is that patients are encouraged to stop their pred too quickly while the underlying cause of the symptoms we call PMR is still active. The inflammation that is no longer being mopped up by the pred starts to build up until it reaches a level your can feel. It is like a dripping tap will eventually fill a bucket and overflow. The inflammatory markers may lag a long way behind, maybe not rise at all if the disease activity is low. But if a week of pred helps a lot - it isn't fibro as that is not an inflammatory mechanism. Tell her to try a different doctor - she might be lucky.

[Grey7 in reply to PMRpro]

Thank you so much, one last question how many prednisolone per day should she take for a week?

[PMRpro Ambassador in reply to Grey7]

Difficult to say - if she is lucky she might get away with 5 or 10mg but safer is to start from scratch and then reduce relatively quickly. But honestly, it is a how long is a piece of string question!

[Grey7 in reply to PMRpro]

Thank you all for your very helpful replies, I follow and read your emails every day, I am down to 1mg prednisone for my GCA , fingers crossed

[PMRpro Ambassador in reply to Grey7]

Fingers crossed indeed - but be in no hurry to get off that 1mg!

[Grey7]

no I won’t, l learnt last time rushing to get off them, and 12 months later and I got GCA again,

thank you so much.

[Pixix]

sorry if I sound negative, but you can have both…I have! See if the Pregabalin helps. It didn’t help my fibro, but I didn’t take it for long ! The side effects were too bad. My other comment is that I’m getting much better support for both diseases through my GP than through the rheumatologists…these ‘diseases’ need long term help, & I think the gp is better placed to do that…the rheumies are busy dealing with huge queues & want to get people off their lists!!

[Grey7 in reply to Pixix]

Hi, did you go back on steroids?

[Pixix in reply to Grey7]

I never got off them…for PMR. It’s been 4 and a bit years, & I’m down to 2mg. It doesn’t help the fibromyalgia at all (I had that for 15 years before PMR joined in). Because of other medical issues (aside from those 2) my Dr is keeping me on 2mg for a while. I did try 1.5mg, but my body wasn’t ready for it. I had to go back up to 5mg on two occasions, so I’m coming down slowly this time. When spring comes I will try a very very slow taper again. I’m an impatient patient, but you have to listen to your body!

[Grey7 in reply to Pixix]

Thank you, I have passed this on to my sister, she will try to see the Doctor today.