Adrenal gland

[yogabonnie]

I may be wrong.. (seldom right but never in doubt!) but is it right that after a few weeks on prednisone my adrenal glands won't be working? And if so...will I feel a change? really tired??? thanks!

[SheffieldJane]

It is my understanding that our own Adrenal Glands switch off as soon as the brain registers that there is plenty Cortisol coursing round the body. Probably within a couple of weeks. Hopefully when we reduce our dose to 7 mgs and below the brain registers that Cortisol levels are getting low and this triggers the Adrenal Glands, situated on either side of the kidneys, to wake up and start producing Cortisol again. A slow taper allows this to become fully functional before the external source is cut off.

I don't think that this is the source of the early tiredness, you have to remember that you have a significant autoimmune disease. Basically you are ill and although the Prednisalone deals with most of the pain it doesn't help the tiredness at these sort of doses.

Exhaustion towards the end of the disease cycle, when you are on a very low dose of Pred, can be a warning that the Adrenal Function is struggling to get going. You can request a Synacthen Test to discover whether your Adrenal Glands are capable of producing Cortisol at this stage. If you have developed Addison's disease ( Adrenal Insufficiency) then the treatment is a maintenance dose of steroid for life. My GP is of the opinion that this would be a very rare occurrence for us.

I hope that helps.

[jinasc in reply to SheffieldJane]

Yes your 'GP is of the opinion that this would be a very rare occurrence for us.'

It all depends on what age your start, how long you are on and the advice is get that test done once down to 7.5mg and below.

The years start ticking past and you can be two, three or four years older and have encountered other medicals problems.

When off pred, you have to carry that Blue Steroid card for you for one year.

[SheffieldJane in reply to jinasc]

Hi jinsac, I suppose he meant me - 20 months diagnosed, but I was surprised that he was surprised at my request for a Synacthen Test. He actually looked a bit taken aback. So off I go down the blood sugar route again. My Rheumie will authorise the Synacthen test at 4 mgs.

[yogabonnie in reply to jinasc]

thank you

[powerwalk in reply to jinasc]

I've never been given a steroid card.

[Rugger in reply to powerwalk]

If you're in the UK, ask at your local pharmacy or hospital pharmacy. Alternatively, you can find one on the internet and print it out. They are on blue card, so might be an idea to use blue paper. Keep it in your wallet or purse or with credit crads, so it's easy for anyone to find, if necessary.

PMRpro has mentioned that the PMRGCAUK northeast group sell them and I've just remembered that when I joined PMRGCAuk charity, they sent me one and a new one at renewal.

[PMRpro Ambassador in reply to SheffieldJane]

The local Medicine guru says much the same - it is very rare for adrenal function not to return if you reduce slowly enough.

On the other hand - there are 3 people on this forum alone who are on corticosteroids for life due to inadequate adrenal function - not all total, just poor. And I have my own suspicions about myself but haven't got that low for long enough yet to worry too much!

[yogabonnie in reply to PMRpro]

Thanks. Something for which I have a long time before I have to worry. Great to know. Forewarned is forearmed!

[jinasc]

Yes, it is correct, they stop working.

Some people do not feel tired, others - join the clan............remember that normally your adrenal glands replenish you for the next 24 hours at around 2am. So when you take your pred in the morning, if you wake up early, say 5 or 6am, take your pred with a cuppa and a jam sandwich or something, never on an empty stomach and get back to sleep, this give the pred time to dissolve and kick in when you need it to start your day. One thing, you will not be able to replenish during the day (ie fight or flight - they ain't working|) so try and avoid stressful situations. Easier said than done, I know.

Put The Spoon Theory in your search engine and read - it might help to explain tiredness/fatigue and how to manage it by pacing.

[yogabonnie in reply to jinasc]

I think the spoon theory is perfect. My husband really got it when he I took away those spoons! I get up at 5 every morning for the day... and don't go back to sleep.. go to bed early.. is the replenishing of adrenal glands dependent on when you are sleeping or consistent? Thank you for all the advice!

[powerwalk in reply to jinasc]

Oh I'm not able at all for stress any more - I think thats what got me into this whole thing to be honest - fighting really bad stress for years. No I have no coping mechanism at all for it - I can feel myself starting to shake when I get stressed in work. Its scary. I have been on the pred for a year and a half now - the fatigue is deplorable.

[yogabonnie in reply to powerwalk]

see my post under "RELAXATION" there is a link to some gentle yoga exercises and relaxation / meditations ..nothing too cosmic woo woo...just a walking through your body. might help make relaxing a habit!

[PMRpro Ambassador]

It depends on the dose. Above about 8mg pred the adrenals do slow down production.

The body produces about that amount of its own corticosteroid, cortisol, which is essential to life. Too much steroid is what causes the side effects and there is a very complex feedback system in place to prevent too much being made. When you are on steroids for a short time it doesn't make much difference - once the pred is removed the adrenal glands take up their task again producing the equivalent amount naturally and also more when it is required in stressful situation. But if you are on much above 10mg for any length of time they do get "rustier and rustier" - so when the pred is reduced it takes a bit of time for them to stage a phased return to work.

While you are on 10mg or so and above you will probably still function pretty well - there is plenty of steroid there and the body doesn't care if it is natural or artificial. Where there may be a problem is if you are under severe stress - illness, infection, trauma or even emotional stress - and then the adrenal glands are unable to produce the spike of cortisol they would normally make. It doesn't always make itself felt, especially when you are high doses as in GCA, there is loads floating around anyway. It's as you get to lower doses (under 10mg) you may not have enough and in surgery or other illness the doctors may give you some extra to tide you over.

As you get lower still you may start to feel more tired - because the body isn't keeping up and producing enough top-up cortisol. It is very unususal that it doesn't take up the slack if you reduce slowly enough though and pretty much all patients are fine down to about 5mg. Most patients are able to continue the reduction even below there though.

Some people feel tired on pred, some people feel energised - impossible to say in advance how anyone will react. And the dose does make a difference.

But we are supposed to carry a card saying we are on long term steroids for the benefit of healthcare professionals if we were taken ill or in an accident. Some pharmacists have them (if you are lucky), the PMRGCAUK northest group sells one and some people choose to wear a MedicAlert-type bracelet. There is a app (what isn't there an app for?) if you have a smart phone. I have a card in my handbag listing my medications.

Does that cover it all?

[CT-5012 in reply to PMRpro]

Absolutely, thank you very much. 💐

[yogabonnie in reply to CT-5012]

Thank you for all this information.

[Hindags]

Perhaps this will help.

aiunited.org/glucocorticoid...

There's a lot there but you can skim to find answers that's relevant to PMR. I found it a bit depressing to tell the truth. About a month of adrenal recovery for every month they are suppressed. At least that's how I read it. But don't count on me to read it correctly. Not these days anyway.

I see my rheumy this afternoon and I plan to bring this up with her. I'll post what I learn, if anything is relevant. I suspect all I'll hear is that everyone is different.

[SheffieldJane in reply to Hindags]

Thank you for posting this article Hindhags, I found it helpful.

[nuigini in reply to Hindags]

Thanks Handags. Very interesting.

[Hindags]

I sent my Rheumy the link to the article. She had read it before I got there and said it follows the standard guidelines and reported the facts as now known accurately.

She doesn't think my weak wobblies are from adrenals trying to kick in and not making it. Unless I'm not getting the full dose of Pred that I'm taking, 8.5, It would be unlikely

As we were walking out of the office. I had a bit of an episode. She saw me walk wobbly. I hope she has a better idea of what I'm experiencing.

She did not approve of my going back up to 9.0. I agreed to stay at 8.5 with exceptions for busy days or special days, or if things get worse. Don't want to be back at square one.

[yogabonnie in reply to Hindags]

good luck. How great your doc READ the article. and saw you wobble. I'm sorry it is happening but it probably helps her to really understand. ! I have printed it out to bring to my GP in whom I have great faith. (he wants me to go to Rheumy so I have appt) He is all for Fosomax for my bones however I think I can turn him around.

[PMRpro Ambassador in reply to Hindags]

"Unless I'm not getting the full dose of Pred that I'm taking, 8.5"

Nobody does actually - the bioavaiability, the amount the body actually absorbs, varies from 50 to 90%. If you are a 50% person - you are getting about 4.5mg while a 90% person is getting about 8mg.

[yogabonnie in reply to PMRpro]

wow that is interesting. YOU are amazing with your knowledge. I think I am a 90% .. every tiny drug (ibuprofen tylenol aspirin works with 1 on me..(NOT FOR THIS HOWEVER) but alway have big drug effect.

[Oldman-1]

Hi Yoga, my consultant has decided to prescribe Alendronic Acid to replace what I`ve lost with this disease. It only came about through explaining to him the symptom of feeling like total physical collapse on some occasions. Holding back from explaining to them is not good. Everyone must describe their experience for proper medical treatment.

[PMRpro Ambassador in reply to Oldman-1]

Alendronic acid isn't going to anything for wobbly muscle feeling. It works on bones.