PMR diagnosis

[jessiem]

After being diagnosed with PMR and not GCA, my pred was dropped from 40mg to 15mg. When on 40mg my severe symptoms disappeared. Now I’m back down to 15mg my symptoms have reappeared - nowhere near as severe but mild pain and stiffness again. Is this normal?

[DorsetLady PMRGCAuk volunteer]

Well maybe not normal - but not unsurprising as a drop from 40mg is a shock to the body.

15mg is very common starting dose for PMR - but it’s not always enough for everyone.

How long have you been at 15mg? And how did you get there?

If only a few days I would give it a bit longer to see if things improve. You need to give your body a little to adjust to new dose.

If it’s longer than a couple of weeks it might be wise to try 17.5mg or even 20mg for a week or so. Then you should be able to go back down to 15mg.

[jessiem in reply to DorsetLady]

Just spoken to GP, said quite normal to feel slightly more pain when dropping from 40mg - only been a couple of days so I’ll see how it goes. Nowhere near the severe pain I had though.

[SheffieldJane]

Start doses for PMR can be as high as 25 mgs. I needed 20 mgs. As DL advises don’t suffer for too long. It may simply not be enough, then there was the steep drop - never good.

[jessiem in reply to SheffieldJane]

Thank you - I’ll see how it goes. Have spoken to GP.

[Arflane97G]

I started at 15mg last September, now at 4.5 mg. have only ever experienced 80 % or so reduction in symptoms but that works for me! Also feel increased stiffness and fatigue in first week or so of reduction but assume that is my body adjusting to lower dose. I took early retirement last year so can nap in the afternoons which really helps and I do yoga via zoom 4 x a week - the hip opening exercises are great for me but I know everyone is different. Best wishes

[PMRpro Ambassador]

How you felt at 40mg may be showing you are someone who needs a bit more at the start - how long were you on 40mg? And maybe you have been doing too much while on 40mg????

[jessiem in reply to PMRpro]

I was only on 40mgs for 2 days whilst waiting for the ruling out of GCA. I hadn’t been doing too much of anything at that point. I’ll see how it goes on 15mg - I’m nowhere near the pain I was in before.

[PMRpro Ambassador in reply to jessiem]

How was GCA ruled out in 2 days?

[jessiem in reply to PMRpro]

Ultrasound

[Green_girl]

You must have had some bigger issues than pain and stiffness to have been on 40mg Pred and to be offered ultrasound for suspected GCA?

Hopefully the diagnosis of PMR instead is correct, but if you experience anything that might indicate GCA I'd get in touch with your GP immediately or go to A&E......

Hope you are feeling less pain and stiffness very soon!

[jessiem in reply to Green_girl]

Headache and high inflammation levels in bloods.

[Green_girl]

Maybe those who have more experience of GCA in the forum can say whether it would still be worth Jessiem querying the ultrasound result or not......? Inflammation is involved in PMR, but not sure if a headache could mean anything more?? I don't feel able to comment further - sorry Jessiem. But hope things improve soon.......

[PMRpro Ambassador in reply to Green_girl]

u/s is as good, if not better than, TAB. On that basis you could say anyone with a headache has GCA. If the dose of pred is enough to manage the symptoms you can't really ask for more I don't think.

[jessiem in reply to PMRpro]

Ive have pain and stiffness for some years - just not as bad as when this started. Apparently the US can rule GCA out pretty quickly. I’m just overwhelmed and very anxious about it all. More bloods tomorrow to check inflammation.

[PMRpro Ambassador]

No better than the UK

[jessiem in reply to PMRpro]

Sorry, US meant ultrasound 🙈

[PMRpro Ambassador in reply to jessiem]

That's what I meant too - the UK also uses u/s to diagnose GCA. Or not ...

[jessiem in reply to PMRpro]

Yes, I was seen very quickly in NHS and ruled out GCA by u/s. Hope I didn’t confuse you?! 😀

[PMRpro Ambassador in reply to jessiem]

Right - clear now ...