How can I tell when adrenals are coming back?

[papadapadoo]

This line from DL's editing of a crucial post in the FAQ is cheering: . "In almost every patient the adrenal gland starts functioning again when cortisone is tapered, it just needs time." Got it. But are there symptoms that suggest the glands are waking up? After 15 months I am at 5.5mg of prednisone, taking it slow and doing OK, but wondering when or if I should notice adrenal activity. It doesn't seem that 5.5 is low enough to ask my PCP for a test.

[papadapadoo]

Only after I posted did some very useful links appear at the right. The general search function didn't do the job. It appears that the answer to my query is "Just hang in there, take it slow, and you may get very tired from time to time." Any more thoughts would be welcome, of course!

[DorsetLady PMRGCAuk volunteer in reply to papadapadoo]

As I’ve said before, you are more likely to know if your adrenals aren’t working…. If you have the usual things we talk about- fatigue [whether all the time or randomly], lightheadedness, nausea or any [unusual for you] gastrointestinal issues.

Some people don’t seem to have any obvious signs of them working or not. In my case it was just seemingly random bouts of fatigue - might go for weeks without any - and then wallop felt like I’d been hit by a tram for a few hours.. From memory those episodes lasted for about 8-9 months whilst doing a slow taper from 6mg down to 3mg. As they didn’t cause any great issues I never bothered to get any tests. But I do know I got away lightly, compared to some.

So yes, just hang in there, take it slow, and maybe if you are under more stress than usual you may struggle more than you would expect… and also be aware that even after finishing Pred they may take up to 12 months [longer for some] to be back in tip top condition.

Like so many things with our conditions, everything is very individual- no simple, one size fits all, answers.

[waltztherapy in reply to DorsetLady]

I'm currently at 6mg and staying there for a while. Besides bouts of tiredness and feelings of nausea, only before meals, I get to feel very 'hyper' - (there must be a better term ) when I feel super active and raring to go! Is this my adrenals kicking in?Thanks.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

I get to feel very 'hyper' - (there must be a better term ) when I feel super active and raring to go Is this my adrenals kicking in?

To be honest, don’t know …does it occur same time/after the other symptoms you describe? Or can you relate it to any other regular occurrence?

[waltztherapy in reply to DorsetLady]

It's not a daily occurrence like the nausea before meals, maybe 3/4 times a week.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

As I said not sure, but do you think it might happen after anything that would cause your adrenal to think “I need to do something”?

When it happens in future might be worth making a note of any thing that happened in previous few hour(s). Could be a complete waste of time of course -but will give you something to do -and might be a eureka moment! 😉

[waltztherapy in reply to DorsetLady]

I have plenty to do and that's when I feel 'hyper" organising my busy schedule of dancing, table tennis and other social activities, with family and friends. So that's the trigger I guess, keeping up with acivities. Agree, it's worth analysing - anything that sheds light on our life around PMR and its treatment, is worth the effort. So thanks again. Forced to slow down in flare ups, and fatigue episodes, giving in to sleep as required, which is not a bad thing I guess. Grateful to get glimpses of our former lives sans PMR however brief. Hope is worth so much, and is what we receive on this wonderful forum.

Thanks again everyone. X

[SnazzyD]

You know your adrenal glands are working because you just get on with your daily life without giving it a second thought. In short, you should feel nothing. If they are not working properly you can easily feel wiped out, weak, empty and shakey. As to how much stress/activity makes you feel like that, depends on how reliably they work.

[PMRpro Ambassador]

It isn't so much you feel it waking up - you feel if it ISN'T waking up ... If you feel OK, don't experience the deathly fatigue, the chances are something is happening.

[piglette]

If you can just carry on like you did on a higher dose your adrenals are probably happy. If you start to feel like a zombie then your adrenals may be starting to complain about having to wake up.

[Bedwell in reply to piglette]

that’s how I’m feeling today!!! Tried to reduce from 2 to 1.5 yesterday.!!! Spent the day on the sofa and am back on 2 today .. feeling awful! Fatigued.. nauseous et rtc

[piglette in reply to Bedwell]

The dreaded deathly faigue! I just gave into it and stayed on the same dose for ages.

[Bedwell in reply to piglette]

When you say ages.. how long. ? I feel quite ill today! App with gp for blood tests etc. this afternoon.. but will need taking.! Don’t know if daughter around?

[piglette in reply to Bedwell]

Several months in my case. How important are the blood tests? If you feel rough I would postpone them.

[Bedwell in reply to piglette]

It’s been a couple of months on 2 mgs. Could discuss on phone and make appointments for tests with gp. Also have the headache on top of the head that I’ve had quite often. Doesn’t seem to be usual ?!

[Bedwell in reply to Bedwell]

I had the adrenal function test some months back and it was positive. ?! Aching now.. I think?

[Bedwell in reply to Bedwell]

Snazzy said “weak empty and shaky” I think. That describes how I’m feeling.. and a cold. Osteopath said I should have waited to reduce till cold over. Prob right!!!

[PMRpro Ambassador in reply to Bedwell]

NEVER try to taper when you are unwell, even "just" a cold. And some rheumies say not to taper in the winter!

[Bedwell in reply to PMRpro]

Thank you! Yes stupid woman!!!!! My rheumy says stay on 3 for the rest of your life!!! As I’ve posted already…

hoping for a bit more quality of life for the time I have left?!?! As my therapist reminds me.. Question your expectations Merelina!!!!

[PMRpro Ambassador in reply to Bedwell]

Do you not think that 3mg and not worrying about tapering and whether it is working or are you flaring is a good addition to quality of life? Many would give a right arm for a doctor with your rheumy's attitude.

[Bedwell in reply to PMRpro]

If I had felt well on 3mgs then ok! But I haven’t felt well since being on pred! It did the job..could lift my arms above my head.. and no pain in shoulder.. but never felt well..

I know there is the “age “ question!!! Am aware that I’m 85. What do I expect. People say .. you’re amazing for your age?!?!

Today I feel quite ill.. .. but I have a cold and I reduced my pred which was stupid. Thanks for your input and care!

[piglette in reply to Bedwell]

I think it may have been nine months on the same dose in my case. But I am a tender little flower! I used to have blood tests every three months at the beginning but that has dropped to six months or even longer unless they are special tests.

[Grammy80]

Although I also take Actemra (GCA), I've been tapering since 2019 and am now on 2 mg of prednisone...the Actemra will continue. Wouldn't it be great if a light would come on and say...ADRENALS ON? No such luck. It sounds like you are coming along well..you are 'carrying on.' If your body wants a nap now and then, take it; we aren't 30 years old as long as you aren't dragging yourself around. You have the advantage of living in Maine, where I left my heart in 2020 and still miss it. Spring is almost here.💞

(I hope to visit Maine in June and can't wait)

[SheffieldJane in reply to Grammy80]

I found this reassuring Grammy80. Sending hugs. Enjoy Maine! My heart is in a certain place in Edinburgh, Scotland. I left 54 years ago and still have to go back now and then and stand outside of my old house, it hasn’t changed to look at. My little ghost walks around the inside as it was, I don’t see the conversion into apartments. X

[Grammy80 in reply to SheffieldJane]

Shared feelings, Jane💘I do know exactly how you feel. You are amazing...and I hope you are doing well. I know for sure you are doing your best. xo 💞

[papadapadoo]

Thanks, everyone, for very helpful posts!

[perceptual63]

Well, now I understand why I get the shakes when I push my body to do more than it can while on prednisone.

[cycli]

I think the problem we all have is that this PMR and GCA turn our bodies defence against us rather than defending us. In the natural process we never had to think about what we needed to do to recover as our bodies took care of it. When that stopped we lost confidence in our body and had to think for it. As we recover and things start working again we are unsure if things are right or going wrong again. Just letting things unroll at their own pace means we have to trust our body to get on with it again on its own. I long for that day to come as I am now down to 6mg and about to reduce to 5.5mg. Unfortunately I relied on my body to heal itself way back when I didn't know I had both and the damage caused made me lose my confidence when I realised what I had. At the moment I am loth just to let it get on without trying to understand what is happening at any one time. Hopefully I can get back to trusting it once again.