Should I go give up on trying to reduce preds

[Johnone1940]

I have been taking preds for pmr now for over 8 yrs . I reduced down to 2 mg at one period but had to increase again due to a return of symptoms then staying on 3mg for 6 months again symptoms returned ie overwhelming tiredness and fatigue I am now on 5mg and symptom free I have now been through this yo-yo ing on 3 previous occasions I normally reduce at a 1/4 mg per month but each time I reach the very low doses symptoms return. Cheers John

[jinasc]

I would ask for a Synacthen test and see if your adrenals have woken up . You are below the level when you can have the test. Sometimes they don't get up to speed and you should get to know.

Don't worry about pred for life, many youngsters are on it all their lives and without it they would not be living.

[SnazzyD]

If your symptoms are fatigue and tiredness I’d look to poor adrenal function. Have a read here from the FAQ section.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Contrary to common perception PMR can last a long time and it is becoming clear it is far more complicated than they have thought previously.

You aren't tapering relentlessly to zero - you are looking for the lowest effective dose and that may be 5mg - or, in my case, even higher. But once you get to 5mg you have two things going on: keeping the inflammation that causes the symptoms we call PMR under control AND waiting for adrenal function to return to normal. The only thing that triggers that is being on a low enough dose of pred but there is an overlap where the oral pred isn't low enough to get the adrenal set up to work well but is not quite enough for day to day functions so you tend to feel very tired and maybe have a few other symptoms. The only solution is to put up with it until you get the other side.

[Johnone1940 in reply to PMRpro]

Thank you for your reply, does that mean that I continue to try to reduce if so how long should I stay on my present dose until I try to reduce again. Whilst I do have a little muscular pain at the lower doses the main symptoms are irritability tiredness and fatigue could this be due to lack of adrenal function if so how do I address the problem. Cheers John.

[DorsetLady PMRGCAuk volunteer in reply to Johnone1940]

main symptoms are irritability tiredness and fatigue could this be due to lack of adrenal function if so how do I address the problem.

Certainly sound like adrenals, SnazzyD did give you link to post, you will see they are listed…..

how to address, a get a ACTH test(Synacthen test) to see if they are capable of working, keep reducing Pred very slowly..and have patience!

[Johnone1940 in reply to DorsetLady]

I did ask my gp for a test some months ago but he said that the test had to be done by the hospital but didn’t offer to refer me. If the test confirms lack of adrenal function can this be rectified or does it mean preds for life. Cheers John

[DorsetLady PMRGCAuk volunteer in reply to Johnone1940]

If your adrenals just aren't working, then you will need Pred for life and referral to Endo..but as PMRpro rightly says test only shows capability not actuality.

As it’s been ongoing for some time, it might be worth nagging GP again, it’s an outpatient appointment …but depends on local situation of course.

[PMRpro Ambassador in reply to Johnone1940]

In fact, while a synacthen test does require hospital input, doing a basal cortisol can give a good indication for a lot of patients and a GP can request it:

ncbi.nlm.nih.gov/pmc/articl...

A blood sample is taken at 9am without having taken the pred dose for the day. A result below one cut-off level suggests adrenal insufficiency, above another cut-off level that adrenal function is acceptable. Results between need a synacthen test for clarity. But it is a good start,

[PMRpro Ambassador in reply to Johnone1940]

Sounds more like the adrenal aspect - and unfortunately it is a question of reducing very slowly allowing time for the body to adjust each time until you get below 5mg when you might persuade someon to look at your adrenal function to see if they CAN produce cortisol - but even that doesn't mean they ARE doing so, It really is a game of patience.

[Sho-Sho]

I have also been on steroids for a long time for GCA, eventually got to 6.5, fatigue & feeling v unwell was so bad my Rheumi sent me to an Endocrinologist for a Synthacen test as was pretty sure the symptoms were no longer related to GCA but adrenal insufficiency. Test showed zero function, this was just over a year ago. Endo suggested trying to taper v.v. Slowly - like you have been doing - then having a Basal Cortisol blood test done by my doctor, if this showed a result above 100 then to have the synthacen test again. I have struggled down to 5 and a half(& wow what a struggle it has been) so now waiting to have the big test as basal result was 155, which means there is a bit of something going on.This bit seems almost as bad as the first year of GCA.

Good luck

[patrickd]

I would. A regular maintenance dose is 4mgs (that is what you need for your adrenal gland to produce/work as an average person should).