Adrenal function at the lower doses of pred

[Animalover65]

Hi, I am down to 2mg of Prednisolone and am feeling a bit anxious about the next reduction

. The worst I felt was at Christmas when I think I was reducing from around 7 mg to 6. For those of us lucky enough to get down to 2mg does it mean that the adrenals must be firing up/ working reasonably well?. My BP is OK but i do have a bit of dizziness and get tired if i overdo things. I also notice i have to watch blood sugar spikes. I succumb to the offer of a piece of cake and coffee I can feel quite unwell and find that its better to have protein with each meal or snack .I was wondering if the adrenals have an effect on blood sugar management.

Thanks in advance for any thoughts/ advice.

[DorsetLady PMRGCAuk volunteer]

Your adrenals are obviously working to a degree or you’d have a lot more issues than you do, but not at full capacity - and can actually take between 6 to 12 months AFTER coming off Pred to be 100%.

Dizziness, fatigue and issues with blood sugars [although usually low blood sugar] is are listed as signs of them still struggling.

As you’ve reduced from 6mg to 2mg since Christmas, I’d be slowly up considerable now, and giving the adrenals a chance to ‘catch up’.

Maybe stay at current dose for a couple of months, and then a slow taper [if not already] and only 0.5mg a time…

plenty of related posts - and this if you’ve not already seen -

healthunlocked.com/pmrgcauk...

[Animalover65 in reply to DorsetLady]

Thank you, yes I was thinking its important now to take things very gently.

[SnazzyD]

First of all, you are doing well to get from 7 to 2mg since Christmas and not feeling terrible so your adrenal glands must be doing something right. It’s just a case of keeping an eye on symptoms and not over doing it whilst at the same time finding out your limits a bit. You are doing well but don’t assume they will fire up in a more demanding situation, which can as simple as being under the weather and then going on a day trip or taking on a garden task. Always keep Pred with you when you go out and wear some sort of medical alert identification.

Usually low adrenal function causes glucose slows. Saying that I found that my carbohydrate metabolism remained more like I was on higher doses of Pred when on low doses until well over a year after I stopped Pred.

If it were me I’d be dropping on 0.5mg steps if you are not doing so already and perhaps stretching it out over a couple of months. I take it your PMR is controlled?

[Animalover65 in reply to SnazzyD]

Thank you for the encouragement. I can agree with being under the weather and then pushing it can cause problems. Its also good to remind ourselves that we need to be careful for 12 months after stopping pred.

I have a medic alert bracelet and carry Pred with me when I go out . I think dropping by 0.5 over a couple of months sounds wise.

[Animalover65 in reply to SnazzyD]

Yes PMR seems reasonably controlled touch wood, apart from some stiffness in legs in the mornings and most of body when i fall asleep on the sofa in the evenings!

[PMRpro Ambassador]

My mantra is "The lower, the slower". 7mg at Christmas to 2mg now is NOT slow I'd stick at 2mg for a couple of months and do 1/2mg at a time for the rest. Shame to spoil the ship for a ha'p'th of tar ...

[Animalover65 in reply to PMRpro]

Thank you PMRpro, I think we should get some teashirts with " the lower the slower" on! x

[Blacksley]

Sorry to hear about your issues but not sure if I can be of any help but here goes. I have had PMR for nearly 5 years but have had many fire ups caused I now believe by MEDICS wanting me to get off PED too quickly by reducing dosage by too much too quickly. I have never got down to anything like 2mg my best which was some while ago was about4mg. The threshold for a flare up has been on a rising trend which led me to join the PMR/GCA Forum. I am Now on a much more gentle reduction path starting at 25mg and am now down to 13mg reducing by 1mg each fortnight. When i get to 10mg i will reduce by 1mg every 3weeks and if I get down to 5mg it will become every 4 weeks. I suspect that after all this time i will never be off PRED. If I can get down to low single figures and at almost 79 am prepared to live with that situation.

[PMRpro Ambassador in reply to Blacksley]

When you get to 5mg I would not only extend the taper times to 4 weekly or more but also only do 1/2mg at a time and use a slowed taper.

[Blacksley in reply to PMRpro]

Thanks for your advice which I hope to be able to follow because I will then be in new territory for me.

[Animalover65 in reply to Blacksley]

Thank you Blacksley, you sound as if you are taking a sensible approach based on your experience and knowledge gained

If my muscles start to complain due to having done a bit of gardening or lifting something heavy- matters improve if I rest next the day. At this point the adrenal adjustments seem to affect me most. However its so good to tune into this site for reminders of the" lower the slower " gmethod etc. Its also been a reminder to me not to overdo things or try to squeeze to much into any particular day. I was also recently reminded that even at 0 pred we have to be cautious for 12 months. I have recently joined an hourly ballet class once a week and the movement and music feels better than any type of physiotherapy.

I think we learn to be more assertive on the PMR/GCA journey as we become more knowledgeable about what we need to feel the best we can. I hope you gradually get to where feels most comfortable and helpful for you.

[9lives]

you have done very well to get down from 7-2 mg. since December. I would heed all the advice that has been given. It took me Couple of years to do that. Xx

Was diagnosed June 2016 and it’s been a long journey. I finally got down to 1mg January 2022, and have stayed there for a year but am struggling to reduce even by .25 mg . Have just gone up to 2.5 mg for a few days as arms /shoulders aching xx

Good luck slowly slowly does it xx

[Animalover65 in reply to 9lives]

Thank you 9lives. The tortoises definately win the race don't they. Good luck with taking things steady. I like your cat pic- reminds me of my black Daisey cat who died 2 months ago.x

[9lives]

aww sorry to hear about your cat Daisy. They are very much part of the family 😿xx