Do I Need More Pred at 5 mg/day?

[Neck680]

Do I need More Pred?

I am 4 years in with PMR, finally down below 5 /day. Twice/week I am on 4.5 —- for 2 weeks.—-but hip pains started pretty severely. I am wondering if I need more pred or if I tough it out as adrenals wake up.

When to ask for synacten test?

Thanks for your wise responses, as always.

[DorsetLady PMRGCAuk volunteer]

If it is a flare then no point trying to tough it out…it will probably just get worse…and the timing is just about right for it to be.

Adrenals won’t help PMR pains -2 different scenarios…but some do get aches and pains with adrenal insufficiency- do you have anything else that indicates a/i - like fatigue, dizziness etc?

Personal opinion - flare, so snuff it out pronto.see this -

healthunlocked.com/pmrgcauk...

Unlikely to get adrenals tested until you get to nearer 3mg….but have a look at this -

healthunlocked.com/pmrgcauk...

[Neck680 in reply to DorsetLady]

Thank you! I will go up to 10mg for a week or 2, then down to 6 and decrease again, excruciatingly slowly. My appreciation again, Amy

[PMRpro Ambassador in reply to Neck680]

Remember though that however slowly you go, you won't get past your aim: the lowest effective dose. You aren't heading relentlessly for zero - you need what you need.

[Neck680 in reply to DorsetLady]

p.s. And there are no other symptoms, just severe pain in hips and thighs… thanks. I’ll ask Rheumy about Steroid card too. I’m in U.S. so system will be slightly different.

[DorsetLady PMRGCAuk volunteer in reply to Neck680]

Yes, it may be different -but you should still have cards available…

[Neck680 in reply to DorsetLady]

of course. I will get on it. Thanks—

[PMRpro Ambassador]

DON'T tough it out - PMR always wins!

No point testing adrenals yet - 5mg is loads to still suppress adrenal function. Endos won't usually look before 3mg pred and all you need initially is a basal cortisol blood test - cortisol done on a sample taken between 9am and lunchtime-ish. That will be enough to give a good indication where you are.

[Neck680 in reply to PMRpro]

Yes, got it and thanks!! I always wonder whether these new hip and thigh pains are PMR or something else- that I had (with less pain) for about 30 years prior to the PMR wallop and diagnosis. The blood tests showed PMR only just before I went on pred. They’ve since been normal. Oh well, I’ll consider it PMR and up the pred.

Thanks muchissimo.

[PMRpro Ambassador in reply to Neck680]

Bursitis maybe?

[Neck680 in reply to PMRpro]

Maybe. No one has ever come up with any diagnosis or medication that works. Certain exercises have helped over the years to some small degree. Once I started pred with PMR the old aches did largely disappear. So, inflammation? Thanks loads --

[DorsetLady PMRGCAuk volunteer in reply to Neck680]

Inflammation can be caused by many things -and when the Pred is higher it can mask/control it.

I had osteoarthritis prior to GCA/Pred - that pain was masked on higher doses, but came back with vengeance as I got to single figures.

[Neck680 in reply to DorsetLady]

Yup. Osteoarthritis may be what I had prior to PMR - although they never diagnosed or treated it as such. It was always an unknown, and surely the pred masked those pains. I did go up to 10mg as of yesterday, thank you, and hoping the pain subsides.

[Chiqui1950 in reply to Neck680]

what are your current CRP and ESR levels? That would give you more information about the inflamation levels in your body. Good luck!

[DorsetLady PMRGCAuk volunteer in reply to Chiqui1950]

Tests may well tell if inflammation is higher than expected -but it can be a very individual thing -and doesn’t tell you what’s causing it.

Anything from a stubbed toe, to a virus to recovering from operation. The last two cause mine to rocket (a couple of years after GCA in remission) and sent my GP into a panic!

[PMRpro Ambassador in reply to Chiqui1950]

My ESR and CRP levels were never raised out of normal range - happens to about 20% of patients

[Chiqui1950 in reply to PMRpro]

Thank you PMR Pro -- Very Important information!!

[Neck680 in reply to Chiqui1950]

Thank you Chiqui1950 -. All normal, right in the center.

[piglette]

I have learnt from bitter experience DON’T try and tough it out. PMR always wins! Just add 5mg for a week and you can hit the PMR on the head then drop back say to 6mg see how it goes and carry on from there.

[Neck680 in reply to piglette]

Thanks Piglette- Always amazes me how much experience you and others have on this forum, and then generously pass on your info on to us. Can’t thank you enough…

[ab58sf in reply to piglette]

I agree. Can't tough it out as we do not know how it may be causing damage and quality of life is important. Go back up, get control, and begin a SLOW taper to a reasonable dose. Good luck.

[Neck680 in reply to ab58sf]

Thanks so much for the ditto to piglette's reply. I went up to 10, will stay here a while, and then go down. Hoping for the control you suggest will happen. Onward.