Old timer with PMR - Alarming exhaustion and aching not experienced since diagnosis 7 years ago

[MaritimeMags]

Have been on a very low dose of Pred (2mg) for nearly 2 years. If I go any lower I tend to have minor ‘flares’ - not much.

Had bad cold and cough 2 weeks ago, followed week later by my 2 vaccinations (Flu and Covid) then last week tripped up and fell down friend’s stairs right from top to bottom. Ended up at A&E at local hospital. Am on Paracetamol for pain in ‘bum’ area BUT yesterday I had absolutely no energy at all, tingling and aching all over body (bilateral!). Felt just like it did when I was first diagnosed with PMR all those years ago. Very alarming. Went to bed really early, exhausted.

I do not have a Rheumatologist. Had word with GP today, explained situation and asked if alarming tiredness and exhaustion after three sets of ‘traumas’ in a row could be because of Adrenalin Insufficiency. She said she thought I need not worry as my bloods had been OK! I thought bloods only done for Inflammatory Markers and would not necessarily indicate that my Adrenalin system was not working properly. I said that I thought my own Adrenalin system normally gets going again if on low dose of Pred (under 5mg). It has been 2 years on a lose dose now.

- I told her I had doubled my dosage of Pred (upped to 4mg a day) and she agreed with this but now I am thinking I will add 5mg to my 2mg for a week, and then drop, due to severity of symptoms.

- I thought GPs could not tell if your Adrenalin system was returning to normal unless a special test was done - but she gave me the impression she could tell from the Blood Tests (Inflammatory Indicators) I had had in the past. Is that right?

[SnazzyD]

Goodness what a lot! If exhaustion is all you have it might just be adrenal insufficiency alone but do not underestimate the effect of a fall on the body generally. People can feel washed out and battered for a week or few after a fall even without PMR/steroids. Your ‘cold’ could well have been Covid and this, as we know, can take a while to resolve after the acute symptoms have passed. Although you were ok on 2mg on a good day, this definitely isn’t a good day and your cortisol needs may have gone beyond what your adrenal glands can produce all the time. Also, nobody would blame your body if the autoimmune activity were to be higher right now and exhaustion can be an early sign even if your markers are ok. I’d be considering using the flare protocol too. This would help the feeling from both scenarios. If it is just low cortisol from sluggish adrenal glands, an extra 5mg should make a huge difference. Given you have flared before, I’d be trying to head one off at the pass.

This is from the flare piece in the FAQ’s which you may already know -

“Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 7-14 days and then drop back down to just above the dose you flared [not to the dose you flared as that is obviously too low].

As long as you don’t stay on the increased dose for longer than 14 days, it’s quite safe to drop back down. If you stay on it longer, you may need to follow a much slower taper.

Stay there for 3-4 weeks to make sure all okay before you try and taper again.

If inflammation has been allowed to build up significantly a staged reduction may be required.

EXAMPLE - if you flare after dropping from 9-8 mg, but were okay at 9mg -

Go to 14mg .......get symptoms under control - then drop back to 10mg .....and continue tapering schedule.

If you’re unsure, or are in a habit of flaring then you may need a couple of steps . so drop to 12mg, stay a week then drop to 10mg......stay there for 3-4 weeks before you restart tapering regime.. “

healthunlocked.com/pmrgcauk...

To know if your adrenal axis is performing your GP would have had to do an early morning cortisol test. As you say markers are not a guide but perhaps they thought you meant a flare. No doubt others will give their view too, so stand by!

[MaritimeMags in reply to SnazzyD]

Thanks. Reply much appreciated.

[DorsetLady PMRGCAuk volunteer]

Oh flippin’ heck! - on 2 counts, your latest escapade and GPs knowledge!

Hope you soon feel better, you were lucky nothing worse that an a sore rear!

Agree with SnazzyD - and she has quoted form my flare protocol -but it here anyway -

healthunlocked.com/pmrgcauk...

Once you’re back on track you might like to explain to GP about a basal cortisol test re adrenal function…

If you think they are struggling, you can request a simple blood test, but you probably will need to be lower than 5mg, maybe as low as 3mg Pred before GP will agree – Basal Cortisol test -which measures your cortisol levels. It is normally done early morning, and you should not take your Pred prior to test [should leave 24 hours] – you should also check regarding other medication, but you do not need to fast

Hope you soon feel better

[MaritimeMags in reply to DorsetLady]

Thank you. Response much appreciated.

[PMRpro Ambassador]

Ouch - no wonder you feel rubbish! And what a naive little GP!!

Snazzy and DL have said all I'd have said, won't repeat it.

She would be able to identify the slower onset of adrenal insufficiency in the form of Addison's disease - that usually leads to slightly deranged bloods: low sodium, high potassium, low bicarbonate, and high BUN (blood urea nitrogen). But this is adrenal insufficiency in the case of a stressful event and rather different. The ED possibly did bloods - to see if there was any chance of a medical event causing the fall down the stairs but so soon it wouldn't show much adrenally speaking. And now your body could do with a bit more to deal with the residual shock and the stress of healing. Hence the Sick Day Rules - though they just double the current dose and when you are really low like you it is questionable if that is enough. So the flare protocol seems perfectly reasonable and might avert a flare if required.

Hope you feel better soon.

[MaritimeMags in reply to PMRpro]

Thank you PMRPro. Response much appreciated. Think I will have to find a good rheumatologist now. Gone for years without, just using local GPs. Think I may know more about PMR than they do sometimes!

[tangocharlie in reply to MaritimeMags]

Think I may know more about PMR than they do sometimes! Not hard, most of us on here would know more about PMR than the average GP sadly.

[PMRpro Ambassador in reply to MaritimeMags]

We know more than some rheumies!!!! Careful what you wish for ...

[SheffieldJane]

You are absolutely right, your GP is dangerously careless in a potentially precarious situation. Some doctors cannot bear a knowledgeable patient. Follow your own advice, including the increase in sick day rules dose. Ask for a referral to an Endocrinologist if these symptoms persist, to get the Synachthen test you suspected might be required in your situation. Another GP in the practice might be less triggering for your GP.

[MaritimeMags in reply to SheffieldJane]

Thanks for the reply. I am trying to organise a visit to a Rheumatologist. I now feel much much better having gone, temporarily, to a higher dose Pred.

[SheffieldJane]

good luck! I have very reluctantly upped my dose too.