When people talk about having flares, what does that mean with PMR?

[Here1am]

I also have ulcerative colitis and know what it means in that context. With PMR I’m still trying to figure out what my base line is, or even if this is PMR. I was started at 60 mg for possible GCA but they believe that is ruled out (no inflammation markers, negative biopsy). The prednisone totally unlocked my hips but stirred up other pains so we’re all confused.

[DorsetLady PMRGCAuk volunteer]

Hi,

No matter what illness you have, a flare is a flare…..it just means your illness has returned when you thought you had it under control…so the initial pains and symptoms come back.

As for the specifics, that’s a bit more difficult as not everyone with PMR or GCA has exactly the same symptoms as the next person….that’s what makes these illnesses difficult to diagnose.

What dose are you on now, and how have you reduced? and what pains do you have?

[Here1am in reply to DorsetLady]

I’ve just gone down to 15mg. I started at 60 in March then 40 after a month then 30 20 17.50. The hip pain hasn’t returned. As soon as I started prednisone at 60 my shoulders started to hurt and became very weak . That has remained, not worse in the morning, it’s all the time. Not as bad as my hips were, just a dull ache. Im tired often and if I do anything that pushes me, I’m achy and exhausted later or the next day. Problem is I also had COVID in January so that complicates things. The hip tightness predated Covid but developed slowly so I’m not exactly sure when it started. I also went through chemo for breast cancer two years ago and developed peripheral neuropathy. So lots going on.

[DorsetLady PMRGCAuk volunteer in reply to Here1am]

Certainly lots going on, poor you.

The hip pain certainly sounds like PMR - and that would still be controlled at 15mg - as that is usual starting dose as you know.

The shoulders are a conundrum……at the higher doses of Pred usually mask most pains….so I’m a bit flummoxed as to what that is. Is that pain being investigated? Personally having shoulder arthritis (one being replaced last year) I know how draining that can be.

The after affects of any activity could be related to your illness …. plus steroids can also cause fatigue.

This post might help -

healthunlocked.com/pmrgcauk...

Are you being treated for your peripheral neuropathy?

Sorry, can’t give you any answers, but you do need to get the shoulder problem sorted - if you can.

[Here1am]

Yes I’m being seen by a neurologist and have just started to see a rheumatologist along with a new primary dr who I like. The rheumy is not the best communicator but the other drs say he is really good with the med part. I’m just trying to get my bearings. I guess I’m trying to parce out what symptom is related to what - what pain is associated with pmr and what is not.