Stimulating the adrenal glands.

[Toolmart]

I understand that your adrenal glands should start to work again at about a 7.5 mg dose of pred and that it can help to stimulate the glands if the pred is taken every other day rather than daily. Has anybody tried this and if so what were the results/ effects. Thanks, Toolmart.

[HeronNS]

My very first reaction is, at 7.5 is your priority to continue to control PMR symptoms or to stimulate the adrenal glands? I know which I'd choose.

[Toolmart in reply to HeronNS]

Good point HeronNS. Thank you for your reply.

[PMRpro Ambassador]

I answered this on another thread where you asked the question - but I will copy the reply here for the benefit of anyone else looking at the thread:

It very much depends why you are taking pred in the first place. Alternate Day Dosing is not recommended in GCA because it is felt there is inadequate management of the inflammation. If the dose is significantly above 15mg/day or for more than a couple of months then there will be adrenal suppression whatever pattern of dosing you try. It is mentioned somewhere that trials of using it in PMR didn't result in good symptom control. It depends a lot on how long the anti-inflammatory effect lasts for YOU. It varies from 12 to about 36 hours in various people. If you are a 36 hour person then you will find symptoms creeping back in in the second part of the second day and overnight, Morning stiffness will be a problem until the next dose kicks in. People for who the effects lasts nearer to the 12 hour end will have returning symptoms far sooner although with double the dose maybe later than just 12 hours though it is difficult to say exactly how long. These patients often find 2x daily works better to manage their symptoms - they are definitely not candidates for ADD!

I used ADD quite early on in my PMR journey and for me it seemed to work well except I struggled to get below 17.5mg/2 days without a flare. Was that the effect of the ADD? Difficult to say, but I had no side effects I was aware of. Then I had some blurred vision which COULD have been due to GCA so I was told to go back to 15mg and daily dosing. It dealt with the double vision, I reduced again but I've never tried ADD again.

The majority of PMR patients will get to well below 10mg and adrenal function will start to return once they are below their physiological dose. It is actually recommended that ADD not be considered until the patient is at 10mg/day or lower.

[Joydeck in reply to PMRpro]

You write,"These patients often find 2x daily works better to manage their symptoms - they are definitely candidates for ADD!"

I presume you mean, "they are definitely NOT candidates for ADD!" I'm a 12-hour person, and cannot imagine Alternate Day Dosing working for me.

Incidentally, I must have tapered too quickly to a split dose of 12/6 because I began to experience minimal aching in the outer shoulders in the past week. It is interesting how the PMR symptoms imperceptibly reappeared after being pain free for a month.

Every second day, I experienced very mild aching first in one shoulder, then the other, particularly in the morning. Yesterday, for the first time, I felt mild, PMR shoulder pain lifting my arms above my head. Last night I raised the pred dose to 13/7 and should be fine tomorrow. A lesson learned!

[PMRpro Ambassador in reply to Joydeck]

Quite right - and I thought I had corrected it!!!! Should have gone to SS...

[TooSore]

As a person who feels even a .5 mg reduction, I personally would never attempt it. I suspect my body would revolt and let me know quite clearly it's thoughts about the matter.

[paulst955]

I have often wondered If PMR was caused by the adrenal glands not working properly in the first place. I have asked my GP about this and all I received was a very vacant stare then a comment no one really knows. I wish someone did, anyone else have any idea. Is there a drug that kick starts the adrenal glands. I've had PMR for six years and cannot shake it off several flares slow tapering etc with no success in escaping.

[nevagivup in reply to paulst955]

I definitely think my PMR was preceded by adrenal burnout. I had just completed a very demanding year long house refurb and garden landscape, not that I did all the physical work, but nonetheless I was utterly drained, without a shred of energy left. After about two weeks of this, PMR started with very stiff neck, painful shoulders - I thought they were due to sleeping under and open window. It was over three months before my GP sent me to a Rheumy who diagnosed PMR and I began the Prednisolone. Nine years later and many relapses in that time, I was constantly exhausted, not recovering despite the slowest taper to 3.5 mg. I was given a Synacthen test ordered by an Endocrinologist, and as I suspected my adrenals cannot recover and I have had to increase the dose to 7.5 mg. I am positive my adrenals have been incapable of recovery in all these years. But at least now that I know that what I have tried so desperately to avoid, that of adrenal insufficiency, is a fact and I no longer have to keep trying and failing to taper to zero pred, and can get on with my life without the life-sapping exhaustion. I'll take steps to minimize the accompanying side-effects and just enjoy my remaining years.

[PMRpro Ambassador in reply to paulst955]

There are a few people who are of the opinion it is poor adrenal function that contributes to causing the PMR symptoms - but if that were the case, no-one would be likely to recover and get off pred altogether successfully would they? They have certainly found some patients with PMR who have poor adrenal function even before being put on pred. There is also growing thought that there are several versions of PMR. Are those of us who have PMR for an exceptionally long time the ones with adrenal insufficiency problems?

And no, what ever you may read on the internet - there are no medications that will kick adrenal glands into life if they themselves don't work. As for recovering adrenal function, it is not a single thing that has to happen. It is a very complex set-up of positive and negative feedback that involves several organs and hormones, including the hypothalamus, pituitary, adrenal glands and even thyroid. Like making a cake or starting your car there are a lot of steps. Interfering with one affects others or more than one factor is critical. If there is no fuel in the tank, your car still won't start when the flat battery is replaced.

I have never assumed a reduction to zero - just to the lowest dose that leaves me feeling well. Like nevagivup, after 14 years of PMR and 8+ years of pred, I now suspect my adrenal glands are not in prime condition! At least if you have had a synacthen test that shows that you don't have the potential to get to zero it saves a lot of messing about - and stops doctors trying to persuade you to try something that is bound to fail!

[nevagivup in reply to PMRpro]

Hear, hear! PMRpro. I can tell you that the not knowing was a lot worse than getting the result. I am so over the constant struggle to "get off Pred," that this is a relief. I too have tried to explain to friends and family that the adrenals are the batteries and no amount of fuel can start the engine without that crucial spark. I take my hat off to you for managing the long battle you have had with this disease.

[Sandy1947]

ADD did not work well for me! I ploughed through it with one flare but now trying DL’s method. Isn’t that OK for reducing from lower doses?

[PMRpro Ambassador in reply to Sandy1947]

ADD isn't really for reducing - it is a dosing regime used from the beginning that is supposed to reduce side effects.

Yes - the original slow reduction that my reduction plan was based on was worked out by a Swedish gentleman who struggled to get below 5mg. It worked for him and we started suggesting it on the original forum. Then we realised it wasn't just below 5mg people struggled to reduce - and so it went on!

[Sandy1947 in reply to PMRpro]

Thanks for the explanation. My doc suggested it to reduce. Not good for me. Started at 2nd week of DL’s plan on Sunday. Felt horrible on Monday. 2nd dose of 13 mg today. Feel better. Back to old dose tomorrow and new on Thursday. Hope this works!

[PMRpro Ambassador in reply to Sandy1947]

You may find you need to go slower - as I say, it takes at least 3 individual days of new dose for my body to stop protesting.

[Sandy1947 in reply to PMRpro]

What do you mean slower? The method will still take 4 weeks since I plan on staying on new dose every day for the last week.

[PMRpro Ambassador in reply to Sandy1947]

Slower - take longer! Actually, the hard bit of my DSNS plan is the first half - once you get to alternate days old and new you are just about there. The body has had long enough to see and accept the new lower dose.

But nothing is slow if it works.

[Hidden in reply to PMRpro]

Mine too. I always give it a week to work out whether pred wthdrawl or PMR trying to raise its voice.