FLARE OR LOW CORTOSOLE

[Den73]

Hi all, please I need advice I really value the sound advice given on this site.I started tapering prednesolone in March from 40mg, everything was going OK managed to get down to 17.5mg by 8th May, then on the 22th of May I started developing a pain in the centre of my back just beneath my shoulder blades a sharp stabbing pain and my shoulders and arms were sore, so my natural conclusion this is my PMR flaring

So I increased to 20mg but made no difference then I started with a headache and tender temples so was a bit concerned about GCA although I had just had a scan on the arteries at my vidit with the rheumy the week before and everything seemed normal.....so yesterday (16th) I increased the pred dose to 27.5 my headache is dull but my temples are tender but no jaw pain or any other symptom of GCA, but sadly the pain in the centre of my back persists without letup, shoulders and arms just tender not madly painful.

I did have a routine xray on Tuesday of this week the result was 'abnormal but to be expected?) Because the pain gets worse when I breathe in, cough or sneeze so my thought was pleurisy but that would have shown up in the xray?

Am I just being impatient and give the increased dose of pred to work or pay a visit to the doctors?

Anyone else experienced pain in the mid back with PMR?

This is my first flare of PMR since it started in August 2023

Thank you in advance x

[PMRpro Ambassador]

The pain in your back doesn't sound like PMR - more like a back muscle spasm. I frequently get that sort of pain, always back muscle related! It can be a muscle spasming that traps a nerve leaving the spine that supplies the arms and that can then cause referred pain. Have you tried painkillers and heat and/or icing the area?

Although we do talk about increasing pred doses, I doubt we would have suggested it here - and the fact you were concerned about GCA means you should have spoken to your rheumatology helpline before increasing such a lot.

Had you been doing something unusual in the day or so before it started? Lifting or vaccuuming maybe? Muscle pain will also worsen with any of the movements you mention - it isn't always your lungs directly.

At the dose of pred you are on it absolutely isn't low steroid levels - any dose of pred above about 8mg acts as a replacement for the lack of cortisol production by your body.

[Den73 in reply to PMRpro]

Thank you so much PMRpro, I did review some comments from previous posts and I started to doubt my increasing preds, it was the headache that got me doubting, because it became quite a banger dont want the GCA back, I did not want to increase the steroids because I have been on a high dosage for so long and I am showing all the signs of bening on lower dose, thin skin bleeding under the skin....as its only a couple of days that I have been on 27.5mg can I just drop down to what it was 20mg without tappering?

I did do more than I usually did during last week I vacuumed for the time🤦‍♀️ very possibly that as it does feel.muscle related.

I am taking paracetamols and using heat havent tried ice, will try ......thank you you have definitely put my mind at rest. X

[PMRpro Ambassador in reply to Den73]

Yes, of course you can drop back to 20, even to 17.5 without tapering. I had an orthopaedic specialist in Germany, way back in my 30s. He forbad me to ever use a vacuum as the position is so bad for your back muscles! I have a cleaner once a week for an hour - vacuums all 3 rooms first and then the rest of the time she does one other job I can't without wrecking my back! Dust is very patient - it will always wait!

Always try painkillers first and if they work it is less likely it is GCA. And overdoing it is very likely to make you feel rubbish if you have GCA - there is quite a bit in the current thread by Velofan about how doing too much can wake GCA feelings up, especially headache.

healthunlocked.com/pmrgcauk...

[Den73 in reply to PMRpro]

Thank you very intetesting re the vacuuming!Being so new on this road I have a lit to learn about being on top of not overdoing things!

Before all this I was a very active person, my whole life has changed and I am battling to accept but the more I read the posts I realise I am not alone in my feelings, just got to work harder at knowing my limitations.

I have just found a cleaner so your suggestion of vacuuming every room first very good, thank you. X

[DorsetLady PMRGCAuk volunteer in reply to Den73]

I have a cleaner once a fortnight - no GCA anymore -but dodgy back and arthritic shoulders…

[Den73 in reply to DorsetLady]

Hi DorsetLady yes thats what I have done, fortnightly is perfect. I'll suppose we just have to accept thete will alwsys be something🙃 xx

[SnazzyD in reply to PMRpro]

If I fancy a bad back or stiff neck or arms, vacuuming is my go to. No other chore does it for me.

[Den73 in reply to SnazzyD]

Thank you certainly learned something again thanks to the experience of all on the forum, the mote I think about it the more I am sure that's the cause! So no more vacuuming. Xx

[Bluey-1 in reply to Den73]

I’ve used the GCA thing to do nothing. Hate housework so employed a cleaner. It was the day I attempted to clean the bathroom and had to lie down after just doing the bath that did it. I was good for nothing the rest of the day.

Shortcuts for cooking include large one pot meals in slow cooker - portions that can be frozen, buying ready prepared dauphinoise potatoes, sweet potato fries, roast potatoes. Now with low cortisol I really have to save ‘the spoons’ for the important stuff in life. Good luck with your pacing and not overdoing things.

[Den73 in reply to Bluey-1]

Oh how true Bluey-1.....when I feel slightly better I tend to think I am sure I will be fine, and then I am not🤫 eventually I will learn😅 but so far can tick a few boxes thanks to info picked up on this site, thank you all for the guidance I am so much in need of😆 Definitely no more vacuuming. Xxx

[PMRpro Ambassador in reply to SnazzyD]

Strange predilections you have there 😂😂😂 Only holding the broom-shaped vacuum does it for me!!!!

[Den73 in reply to PMRpro]

🤣🤣🤣 thonk I am in your boat now too. At least we have a good excuse🙈

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

😂🤣 whatever rocks your boat….