still getting fatigue on reducing

[Trulyscrumpious]

l was diagnosed in 2016 ,when the rheumatologist said she was happy with a maintenance dose of 5mg. So l was on a dose of 5 mg for over 5 years. I’ve never had a review of any sort. But in Jan 2024 l became pre-diabetic .l went on an NHS course but was still pre-diabetic. This prompted me to try and reduce. I’ve got down to 4 mg ( 2 months on 4.5mg, and now 2 months on 4mg). I’m not getting any aches but do still get the same fatigue, so don’t know whether to go on down. Any advice please.

[DorsetLady PMRGCAuk volunteer]

Sounds very like adrenals struggling - fatigue is the most common symptom.. do you have any others, like nausea, lightheadedness etc?

You could try staying at 4mg for another month and see if things improve and give adrenals a chance to think about working- but after 9 years on steroids I doubt they be very keen..

If I were you, I’d be asking for a referral to an endocrinologist for advice on adrenals..

[Trulyscrumpious in reply to DorsetLady]

Thanks so much for replying. I think that’s a good idea because as l said l have never seen a rheumy or GP. This wonderful forum has answered any queries l’ve had. I’ll see my GP- if l can get an appointment!

[tangocharlie]

NHS courses vary so much in what they tell you - are you on a low-carb diet to help your diabetes?

[Trulyscrumpious in reply to tangocharlie]

Thanks so much for replying. The course was called Second Nature, and it has helped to get used to a sensible low carb diet. One trouble with this course was that it was obviously aimed at those who were overweight, and l actually lost too much! One stone in 8 weeks, and l began to look hagard . So then l was told to up the protein, with too much milk, and l am still living with an inflamed gut- sorry too much information! I haven’t got diabetes yet so want to avoid it if l can. I’m going to try and see a GP.

[tangocharlie in reply to Trulyscrumpious]

Ah, sorry my misunderstanding I suspect your HbA1c might now be OK then. Rapid weight loss can be a sign of adrenal problems as DL says above and happens to many people, self included, when you go below 5mg Pred. I lost a stone in a few weeks and nothing else had changed apart from me going from 5 to 4 mg Pred. Diahorrea can also be a symptom. For a full list of symptoms google adrenal crisis or Addisons - its not the latter but a similar drug induced form of it. As DL says you need to be referred to an endocrinologist ASAP. Personally if i were you I wouldn't risk an adrenal crisis and I'd go up to 5mg of pred or whatever level above where you started to get these symptoms until you get an appointment that can test to see if your adrenal glands are capable of coming out of hibernation.

[Trulyscrumpious in reply to tangocharlie]

Saw a GP this morning. I’m to have blood tests to see what’s going on.

[tangocharlie in reply to Trulyscrumpious]

Ask for a 9am cortisol test

[PMRpro Ambassador]

It is well known that as we age our adrenal function diminishes so it is quite possible a clued up rheumatologist was also bearing that in mind with the 5mg maintenance dose. If nothing else, you don't have any pressure on you to reduce the dose and you can take as long at each new dose as you like or need - and 2 months really isn't that long.

[Trulyscrumpious in reply to PMRpro]

Thanks so much, that will take the pressure off. My thinking was to try and reduce the risk of diabetes, by being on as low a dose as possible. But l am continuing on a sensible low carb diet.