What does reducing look like for a person with no adrenal function?

[bunnymom]

I have just had an awful couple of days trying to reduce. I was at 3 and reduced one quarter one day. 4 days later I started having anxiety which magnesium capsules helped (I am seeing a wellness nurse practitioner) The next week I decreased a quarter 2.75 on the same day. Both on Mondays. Four days later I have never felt so awful. Pain the stomach, nausea, headache, no appetite, over all blah, fatigue, aching in the hips, mentally very grim. know some of this is steroid reduction but I don’t think I have any adrenal function left after 8 years. I feel I’m putting myself in a dangerous situation medically when I try to reduce. Realizing now of course that I should have spaced it out more. My question is is there a point when you throw in the towel and just continue on with your low dose. My doctor is ok if I want to do that. Thank you.

[DorsetLady PMRGCAuk volunteer]

I'd be inclined to stay to go back to 3 or 3.5mg - and get [if not already] your adrenals tested... to see what levels they are...

..and highly unlikely you won't have any adrenal function, but certainly it sounds very low at present... and certainly the majority of those symptoms would confirm that.

[bunnymom in reply to DorsetLady]

Thank you.

[yogabonnie]

I am going through exactly that. Ended up going to 4 (was tapering from 2mg to 1.5ovwr long period and flared) then had to work way back to 2mg … was so miserable and exhausted and in bed so now back at 2 and have appointment with rheumatologist July 11 will let you know what she says . I started this Nov 2017! What a long haul ! But good news I improved my spine dexa score with heel drops!

[bunnymom in reply to yogabonnie]

Yes I’d be interested in what you find out. I’ve been at this since 2016.

[Meggsy in reply to yogabonnie]

Thank you for the heel drop information yogabonnie. I have been doing them daily since you mentioned it. 🌹

[Archie09 in reply to yogabonnie]

Can I ask what are heel drops?

[yogabonnie in reply to Archie09]

you just lift up on your toes and clunk your heels on the floor. 50 times a day or a couple times a day. my spine dexa score improved 5% !!!!! barefoot and on real floor not rug. stand straight!!! use a chair if need be!

[Archie09 in reply to yogabonnie]

Thanks I’ll try that but not at the moment just had a total knee replacement

[SnazzyD]

When you reduced, what did you do in the 4 days leading up to the crash?

[bunnymom in reply to SnazzyD]

I would say just regular life. Nothing too demanding.

[SnazzyD in reply to bunnymom]

I found when my adrenals were struggling, even normal life was too much after a reduction and so I had to withdraw as necessary. I had at least one very tediously grey year until the lights came back on in my adrenal axis.

[PMRpro Ambassador]

The return of adrenal function isn't like a toggle lightswitch - on or off. It is more like a dimmer switch that sticks now and again. It doesn't happen in a week or so either - each step can take months. Even small ones. And normal life is a series of minor stresses - even at a steady dose you can have wobbles!

[PMRCanada in reply to PMRpro]

I am learning that!

[Zebedee44]

Hi, I’m in the same boat. And like you have been dealing with PMR since late 2016, finally trying to negotiate the lower range of pred but struggling with what I assume is adrenal fatigue. Same symptoms as you describe but the worst thing is that Sometimes I feel like my brain simply cannot engage, as well as my body wanting to curl up and sleep a lot. No appetite, living on banana, yoghurt and granola! And a horrible wobbly belly!

My endocrinologist has already suggested that I might have to accept a future of small dose of pred but the harm it is doing to my œsophagus and the additional harm done by the lansoprazole are now being noticed. I’m trying to get to 3.5mg from 4mg and it’s GRIM! i do sympathise with everyone going through this 🤒

[bunnymom in reply to Zebedee44]

Yes. I’m fortunate that I have few side effects so wonder why go thru the torture of getting off? I feel for you. It does take a toll on the quality of your life.

[Zebedee44 in reply to bunnymom]

The trouble is it’s not just the pred you have to stay on, you still have to continue other meds, diet, lifestyle etc not to mention family and friends thinking you are all better now.

[Manihiki]

I got to 3 and felt like that so my rheumatologist had me have a test which showed adrenal insufficiency. He put me back on 5 and said to drop by a half every 3 months. So far, so good at 4 but do it by a quarter every six weeks. I have been on prednisone for 7 years so this is a long slow process

[bunnymom in reply to Manihiki]

So how can you reduce if you have adrenal insufficiency? Does he assume they will pick up or is he giving you something else. Also I’d be interested to know what your reduction schedule looks like. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

So how can you reduce if you have adrenal insufficiency?

Very slowly -insufficiency doesn’t mean none. .. and yes, in most people they will pick up..

..for most it’s a very slow taper (as we recommend) and tiny steps.. as Manihiki is already doing.

If can take up to a year after coming off Pred for adrenals to be back to full function.

Hopefully this might explain more -

healthunlocked.com/pmrgcauk...

[Manihiki in reply to bunnymom]

The rheumatologist said that having adrenal insufficiency does not mean you can not get off prednisone, it just means you do it slowly in small increments to allow the adrenal glands to wake.

[Wizards]

As I mentioned to someone else in the USA. I've been off 1.4 yrs but getting off was hell for me.Everything everyone is to you and worse. So from someone who's been there my recondition is to stay at that 3mg for a long time up to a year if necessary.

Do not rush all those years of hard work.

I did stay 1 yr at a specific dose but my research was old school the dose was to high to let adrenals to kick in.

Stay put and best of luck to all of you.

[bunnymom in reply to Wizards]

Were you having side effects even at the low dose? Or did you just want off the meds?

[Wizards in reply to bunnymom]

At 5 mg I had the symptoms of adrenal insufficiency and rhumitologist put it aside. It was the beginning of terrible exhaustion. By the time I was at 2mg I was so exhausted I had a hard time doing things. No pain.She tested me and was shocked I was extremely low.

Told me if I caught anything I could be dead.

By this time I had most of the side effects of adrenal insufficiency including taste buds gone wacky. No longer liked coffee which was good because it's on of the foods to stay away.