Questions

[ndstephens49]

This PMR has been going on for two years. I was down to 7.5 mg prednisone about 3- 4 months ago. Now I’m back up to 40 for two days now and having horrible left and right hip pain. Also right shoulder pain and some neck pain. Labs drawn 2 days ago but no results yet.

When laying down, I can’t get up without help. When sitting, to get up with great difficulty, I have to lean forward and bend my knees, lean forward, put my hands on my knees, and walk my hands up my thighs slowly in order to stand up. Cannot bend over from standing position to pick up something on floor. If I shift about during sleep, the pain awakens me. When I’m sitting still, breathing can set off hip pain. Is this still PMR or is something else going on?

Two years ago my worst pain was in my neck but it faded with the prednisone. At that time my SED Rate was in the 90’s (normal here in US about 20-30). Can’t remember CRP.

Any thoughts?

Nancy in West Virginia

[SnazzyD]

Oh dear, not nice. Did you ever find a Rheumatologist and not have to rely on an “overwhelmed” MD?

Why were you hiked up to 40mg rather than something a bit lower? When was the last dose you were comfortable at?

Where is the pain located exactly?

[ndstephens49 in reply to SnazzyD]

Thanks for your quick response.

Most pain in hip area and tailbone, shoulders, and between shoulder blades.

Covid has resulted in postponing rheumatologist till September.

I’m not sure why my GP bumped me up to 40 from 15 mg. I was ok at 15 mg for a couple of months, than it wasn’t last week.

I have had sciatica in the past and this pain reminds me of sciatica but it’s not in same place and the pain does not radiate down leg.

Nancy

[DorsetLady PMRGCAuk volunteer]

Crikey, 40mg very high for PMR flare - any idea why that dose? and what is projected taper back down?

2 days at 40mg one would expect a better reaction - maybe give it until Monday to see what happens, but you may be correct in thinking that there is anything else going on.

If you're still the same on Monday, you need to seek medical advice.

[PMRpro Ambassador]

That sounds like (at least) what I call PMR plus. I also have myofascial pain syndrome, not uncommon alongside PMR and when it gets bad it makes everything bad! However - those hips need checking out to rule out other things before concluding it is "just" PMR. Does anything help?

[ndstephens49]

I think I know now why I was bumped up to 40 mg prednisone. After the PMR, I did develop GCA which hung on for a year. We are just waiting now till I get into Rheumatology, I think, which is in September. I’ll see my GP this Wednesday and we will have a plan.

Nancy in West Virginia