Advice please

[Marley12b]

Hello. I am new to this site but not new to prednisone. I was diagnosed with GCA in 2016 through a regular eye test, nearly didn’t go as felt very fluey at the time. Glad I did I was sent straight to hospital with a letter to be seen immediately by a rheumatologist. My CRP was 139 and I was started on 3gms on prednisone, 1gm a day over three days intravenously then 60mg daily reducing over a year. Repeat that in 2018 then Covid hit in 2020 and I was still on an high dosage and I got lost in the system. I chased and got a different doctor who was horrified that I had been on steroids so long. Sorry for the ramble but my question is that now I am clear of steroids (last one 28/09/23 I appear to have developed Chronic Fatigue Syndrome. It’s not Polymyalgia as my CRP is 8.5 and the rheumatologist is happy with single figures. Thank you Julie

[PMRpro Ambassador]

Hi and welcome.

Do I understand you were on a highish dose of pred from 2018 to 2021 or was it longer and how high? Then how fast was the taper? And how long did you take to taper from 5mg to zero?

They are relevant questions - because it sounds as if you were at a dose that would very effectively suppress cortisol production by the adrenal glands for some considerable time and then tapered to zero relatively quickly. That isn't a problem down to about 8mg pred but below that you should have gone slowly to allow adrenal function to recover. As you reduce the pred dose, the adrenal glands should start to produce cortisol to top up the reducing pred dose to the level the body needs to function properly. If you reduce faster than the adrenals recover, then you experience the symptoms of adrenal insufficiency which is predominantly fatigue and inability to deal with stress of various sorts. And yes - it would look like CFS to the inexperienced.

Did the doctor ever measure your basal cortisol as you reduced? Or do a synacthen test?

[Marley12b in reply to PMRpro]

Thank you so much for your response. I can only find my records going back to April 2021 when my CRP got to 5 and I was on 9mg reducing to 8mg 6 weeks later. This continued until 13/12/21 when I had got down to 6mg but had a flare up and CRP rose to 58 so went back to 15mg staying there until 15/03/22 when CRP had reduced to 8. Having spoken to the rheumatologist I reduced to 10mg but it was too much so back to 15mg then back to reducing 1mg every six weeks taking us to 22/05/23 when I was finally down to 2mg. From 9/6/23 1mg one day 2mg next day alternating every day until 25/6/23 when I saw rheumatologist when I dropped to 1mg every other day until 28/9/23 when I finished, having blood tests before every drop. Started to get the CFS symptoms in April when I dropped to 4mg. I did think about adrenal fatigue but I thought because it was so slow it would not be that. I’m not sure which scenario is the best. Thank you

[PMRpro Ambassador in reply to Marley12b]

By our standards that was not a slow reduction, especially that weird alternating doses approach - it seems favoured by many doctors, we find it confuses the body as that yoyoing from 15 to 10 and back - and 2mg can be enough to make things feel better than they are. 4mg is a very typical level to really get the deathly fatigue of adrenal insufficiency. There are some on the forum who took as long to get from about 7mg as they took to get there from high doses.

[Marley12b in reply to PMRpro]

Thank you for all your help. What should be my next step?

[PMRpro Ambassador in reply to Marley12b]

Difficult to say. I would seriously consider asking to go back to 4mg where you last felt good and taper again very slowly, That depends on a GP who will realise the significance of the adrenal role. At the very least I would want a basal cortisol taken - between 9am and 1pm. Below 100 is definitely adrenal insufficiency, over 450 is absolutely normal and in between gives some indication of whether your adrenals are doing anything but needs a synacthen test to confirm one way or the other, If it is low then an endocrinology appt to discuss whether you require emergency hydrocortisone in the event of an adrenal crisis.

[SnazzyD]

in addition to what PMRPro has said, have a read of these bits of information from our FAQ’s about adrenal function. Poor adrenal function can feel exactly like chronic fatigue syndrome is more serious if it is not managed properly or the patient isn’t aware.

healthunlocked.com/pmrgcauk...

[Marley12b in reply to SnazzyD]

Thank you I will look at FAQs

[northwesterner]

I was on prednisone for 10 years and finally weaned myself off. I no longer wanted to be at risk for steroid induced diabetes. I now take several supplements such as Glucosamine Chondroitin and Tumeric. I still have a little joint pain in my knees but feel pretty good otherwise.

[Marley12b in reply to northwesterner]

Thank you, very helpful advice