Reducing Effects

[Lenore58]

I just read DL’s very helpful article, Reducing Steroids & Activating the Adrenal Glands. So grateful for all the information and support here. It would’ve felt like walking through a dark and threatening forest without you all.

I guess I’m reaching out for the usual reassurance and encouragement regarding tapering and moods. I’m down to 5 mg of prednisone. I’m feeling very well physically except for fatigue. What is troubling me is my mood. I’ve had some mood swings at higher doses but now I feel like I have a consistent sadness that I can’t really shake. I just feel down every day for no reason. On top of that, I am rather cranky and impatient, and don’t seem to have a lot of verbal self-control or wisdom. My feelings are hurt very easily, and I feel suspicious, even a bit paranoid, if the slightest bump happens in a relationship. I feel quite unlovable at this stage. A part of me wants to go into a quiet cave of isolation but another part of me needs connection badly.

I suppose all this is normal, but how long does it last? Until months after being totally off the prednisone? It’s a very discouraging thought.

[DorsetLady PMRGCAuk volunteer]

All the things you describe can be attributed to your adrenals stuttering - as you probably suspected.

As we say in many things, it’s a very individual process…no magic bullet nor timeframe. .. just a matter of slowly tapering, plenty of TLC [even if it has to be self administered], time and patience. You may find talking to a therapist helps in some way, or looking online for help - if that’s a consideration for you personally. This was produced by the NHS during covid, but there may be some strategies in there that help.

nhs.uk/every-mind-matters/m...

If it’s any consolation, others have felt the same, and have come through and out the other side. 🌸

[Lenore58 in reply to DorsetLady]

Thank you, DL, it DOES help. Looking forward to "the other side." I'll read the article; thank you so much.

[Miserere in reply to DorsetLady]

I'd like to read the article but not sure where to find it? Thank you.

[PMRpro Ambassador in reply to Miserere]

Click/tap on the link - the text in blue - and it should take you to it.

[Miserere in reply to PMRpro]

Thanks but that seems to be a link to an NHS article about anxiety etc.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

You mean the adrenal one? In the FAQs - but have linked it-

healthunlocked.com/pmrgcauk...

[Miserere in reply to DorsetLady]

Thank you!!

[Paulagcl in reply to DorsetLady]

Yesterday I started to reply to a post that was either yours or Snazzy about carrying prednisone with us after having tapered off it since the adrenals aren't working up to par. But what would be the point of taking the prednisone then? It's frustrating that my rheumatologist won't deal with this. My pc doctor does, luckily, and I realize there's no one answer, but still!!!!

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

If your adrenals aren’t up to par, and you find yourself in a situation where they need to provide that extra oomph -then a dose of Pred (which is a chemical form of cortisol) will come to your aid -and hopefully stop you having an adrenal insufficiency attack.

[Paulagcl in reply to DorsetLady]

This is probably a stupid question, but I am wondering what the point is where I should take it--I am much more tired than usual, but so far managing it with taking a rest in the afternoon. There might be more of a dip but it doesn't last. Same with mood swings, almost minute to minute at times but it helps to know it is physical, not just psychological.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

No question is stupid…😊

Probably best to try and cope without upping Pred… if you can.

If it’s not in an emergency type situation [which obviously is a whole different ball game] each time you up the Pred, it just takes longer for the adrenals to do what they need to…

[PMRpro Ambassador in reply to Paulagcl]

It was Snazzy who mentioned it and it was so you have some pred with you just in case you start to develop an adrenal crisis - feeling really unwell, dizzy, confused, disorientated, nauseous, diarrhoea etc. If you don't take a dose of pred there and then, you can end up in a state of collapse and even paramedics may not realise what is going on. That is when having a bracelet or other notification can attract attention - and that is the purpose of the new red stseroid emergency card.

[Paulagcl in reply to PMRpro]

Ah, thank you. I have been down to 1 mg for a couple of weeks and suddenly my balance is really bad. My pc thinks this could be the adrenals not up to par, the rheumatologist doesn't believe in this, thinks my pc is just trying to calm my anxiety. Confusing.

[PMRpro Ambassador in reply to Paulagcl]

Well - I'd side with the PC!

[Paulagcl in reply to PMRpro]

Strangely enough, I asked the pharmacist here about an emergency card and he said he'd neve heard of that -- at any rate, they don't provide them. So I printed something out from the internet.

[PMRpro Ambassador in reply to Paulagcl]

They are international and the American Society of Endocrinology (or whoever) does have something on their site I think.

[PMRpro Ambassador]

Sluggardly adrenals! The fewest of even doctors recognise it, warn their patients and offer some psychological support. And made all the worse because it's a "How long is a piece of string?" problem. DL has made some suggestions - do investigate them.

[kangaroojohn]

I am on 4.5 and until Tuesday was also suffering from fatigue/mood issues day after day. But from Wednesday they have lifted like magic, so we shall see....

[Body_bonkers]

You’ve summed up how I feel so well. I think it’s ‘just’ the body trying to protect itself. If we have no cortisol boost to run away from a saber tooth tiger then it pays to have no distractions i.e. no people, be very alert/sensitive and want to stay in a cave ! Time for us to really look after ourselves for sure