Adrenal start-up advice needed

[jinoadby]

I was diagnosed with PMR in July 2021 and started on 15mg. I have got through 2-3 hiccups with the help of this forum, and have now just settled at 6mg after a slow taper from 6.5, but,

I seem to have hit the dreaded adrenal fatigue and joint pain period. Also , as per advice here, I have shifted taking my pred from 3-4am to 7-8am. I have found that if I take a couple of paracetamol when I get up to go to the loo at about 4-5am then quite a lot of my morning stiffness is eased, but I still have to to take it easy for an hour or so until the pred kicks in.

My question is this. As most of my discomfort is helped by taking paracetamol, I am intending to start a slow taper to 5.5 next Saturday, but I am working on the assumption that by going lower, my adrenals should get more of a push to get working. However I don't know for sure that my assumption is correct. If my thinking is basically right, then I am prepared to push on (slowly and carefully), but am I right or wrong?

[PMRpro Ambassador]

The only thing that triggers the adrenal is low corticosteroid levels at about midnight and yes, the lower you can get and still function, the better.

But why did you move the morning dose to 7-8am? There is no need, all that matters is that the dose is taken after midnight and the earlier you take it then, the lower the level will be by midnight. All pred should be out of your body in 5.5 half lives of the drug, 1/2 life for pred is about 3-4 hours so it takes 16 to 22 hours. So actually, 3am is ideal. AND you get a good morning to boot ...

[jinoadby in reply to PMRpro]

Thank you, I had a feeling I was going wrong. I don't remember where I read it, and I knew I should have checked with you before I changed. I shall change back and continue as planned. I am soooo grateful to this forum, I am confident that with your help I will beat this.

[DorsetLady PMRGCAuk volunteer in reply to jinoadby]

Controlling or managing it rather than beating it a better mantra - and more realistic! 😊

[hurryupharry in reply to PMRpro]

Thank you for asking the question and for Pro’s informative answer. After reducing for years, I have been taking 1.5 mg for about 4 or 5 months, I feel fatigue and pain in the mornings. However, I am preserving in the belief that it will get better and my body will start to produce enough cortisol to start feeling how I used to.

[AuthorJ in reply to PMRpro]

PMRPro thank you so very much! My rheumatologist said I should take pred in morning. I usually take around 9 am. Now I will take at 3 am! I never knew this before. I am now down to 4 mg pred (Istarted at 15 mg which stopped symptoms immediately for me! Pred is my good friend! I took methotrexate along the way. If taking Methotrexate, be sure to know the food restrictions with it). I plan to go to 3.5 mg and see if the time taken and the reduction work. Excited to have learned more about my adrenal!

I love this group!!!

[Abykarma in reply to AuthorJ]

Hi AuthorJ, I have never heard of food restrictions with Methotrexate, which I take. Could you mention a few, or point me to a web site where I can read about this. Many thanks.

[AuthorJ in reply to Abykarma]

My rheumatologist said things to avoid include include alcohol and grapefruit as they can increase liver toxicity I also heard thatdiet cola can build the drug in the body and make it hard to shed the drug.

A really good website is myclevelandclinic.org

just Google. oral methotrexate There are many reliable websites out there.

[Abykarma in reply to AuthorJ]

Many thanks Author J

[AuthorJ in reply to Abykarma]

most welcome

[AuthorJ in reply to PMRpro]

wow! I took my pred at 2 am and I am feeling better than ever! Thanks PMRPro and DL! This forum is awesome!

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, if you wake up to go to loo and take paracetamol early doors, why not take Pred at same time?

[PipandDots in reply to DorsetLady]

I am interested in doing this as I currently take 4.5 at lunchtime. Would you have to eat at 3am if you take the dose then?

[agingfeminist in reply to PipandDots]

taking it with a few spoonfuls of yogurt seems to do the trick

[DorsetLady PMRGCAuk volunteer in reply to PipandDots]

small snack of some sort-spoonful of yogurt, piglette has small cube of cheese, plain biscuit.

[Bcol in reply to PipandDots]

Usually have a yogurt pot and a banana with mine. Assuming I've remembered to buy the babanas, didn't have any this morning. 😒

[bonio in reply to DorsetLady]

is it ok just to change the time you take the next dose. So if I take at 8am then just take when I get up at 2.30am....you can set the clock by me doing that! Thanks this is wonderful advice.

[DorsetLady PMRGCAuk volunteer in reply to bonio]

Yes, shouldn’t be a problem…

[jinoadby]

Thank you. Your mantra is better than mine, I shall adjust my language accordingly.

[DorsetLady PMRGCAuk volunteer in reply to jinoadby]

Positivity does help....

Not you nor many others ..but some people see themselves as victims... and have a 'woe is me' attitude. No point in that, gets you nowhere, except miserable...not saying PMR or GCA are easy, but there a lot worse things in life.

When I was a mere slip of a thing [about 14 I think] I complained to my mother that it wasn't fair because she told me to do something I didn't want to.. her response was "nobody ever promised anyone that life was fair, you just have to make the best of what you've got"...🌺

[jinoadby in reply to DorsetLady]

I agree, but although I have never said 'woe is me'', I have occasionally stamped my feet, wept a little and asked 'why me'. I have never answered myself, but I usually feel a little better afterwards. I only ever do this in an empty house, but I see nothing wrong with a little self pity when it all gets a bit too much.

[PMRpro Ambassador in reply to jinoadby]

That is OK and we have probably all done it at some point. But for some it is a badge of honour and they wear it on their avatar ...

[Meggsy]

Maybe you won’t need the paracetamol if you take the pred early. I have always found everything was hunky dory when I next woke after early morning pred.

[MikeVanBC]

This is an excellent conversation that to me is very timely. Thank you for starting it jinoadby, and to all who have replied. I too am having a lot more pain trying to reduce from 5.5mg to 5, even when using both dosages on alternate days. Is this likely to improve, or am I better off returning to 5.5-6mg and trying a taper at a later date?

[PMRpro Ambassador in reply to MikeVanBC]

If 5.5 leaves you pretty much pain-free, that is what you are aiming for, if reducing the dose even slightly makes PMR symptoms worse - you are trying to go too low. However, don't forget that adrenal insufficiency can also cause joint and muscle aches. PMR symptoms emerging will usually get worse from day to day, adrenal-related problems will improve over time but it may take a long time.

At this stage you would be better using one of our slowed tapers which are in the FAQs. 1/2mg at this stage is 10% and dropping overnight or even by alternating is quite a shock to the body. The slowed tapers get the body used to the new lower dose much more slowly.

[Frewen1 in reply to PMRpro]

This is all so interesting, thanks everyone. I'm GCA, not PMR, and my joints shave started hurting quite badly only recently - and I've just reduced to 6mg Pred (going down 1/2 every three weeks). Also on TCZ, but the pain down the leg bones and hips is quite acute, and has come on suddenly, So, not a coincidence? And just read with fascination PMRpro's suggestion of taking Pred during the night - I always wake up for the loo, is that a good idea, then? Normally I take all meds between 8 and 9. Thanks for reading x

[PMRpro Ambassador in reply to Frewen1]

If you are on TCZ it SHOULD deal with the inflammation of PMR too. But even TCZ only works for half of patients with GCA - there are 3 mechanisms in GCA, TCZ only works for one of them and if your GCA has elements of the other two, you will need some pred to deal with the inflammation due to them. It is possible that PMR is the same of course.

[DorsetLady PMRGCAuk volunteer in reply to MikeVanBC]

as mentioned PMRpro-

healthunlocked.com/pmrgcauk...

[Suffolklady]

So how do you know if the adrenal gland will ever work again. I’ve been on Pred for 9 years to my shock never realised it was that long. Been on 4.5 for a year with advise from endocrine not to reduce further. Had a basic test and without my morning Pred the reading is only 16 where at an estimate it should be 320? Bit worrying as I seem to be at a stand still.

[PMRpro Ambassador in reply to Suffolklady]

4.5mg is plenty high enough to suppress cortisol production so the reading isn't surprising. But to improve it you would have to get to a lower dose of pred ...

[Suffolklady in reply to PMRpro]

So it’s not dangerous to go down some more if the adrenal gland will not function anymore? I was told any lower could cause adrenal insufficiency? I’m only asking as I know after many years of being on Pred it can stop the adrenal gland totally.

[PMRpro Ambassador in reply to Suffolklady]

Well yes it is and that is the conundrum - you can't persuade it to produce cortisol if you are taking pred but the pred is the replacement therapy for adrenal insufficiency. But they don't have proof your adrenal function is gone entirely. People have been on pred for 13 years and still regained adrenal function. The test is to reduce the pred in small steps and slowly and monitor cortisol levels. The synacthen test only shows if the adrenals are capable of producing cortisol, not whether that is actually happening reliably as it is a very complex thing, and the synacthen test is no use at all until below 5mg, preferably well below.

[Suffolklady in reply to PMRpro]

Yes exactly it’s a thing you take a chance on. I feel pretty rotten as it is, tired muscle pains ( don’t know if it’s part of it or whether the lack of motivation stops me exercising) I get a surging feeling when I wake up like a rush then it goes. Headaches, I could go on. I’m a creaking door anyway so it’s weeding out what is due to what. Are you saying 4.5 is sufficient to hold the adrenal gland up. There was talk about hydrocortisone from my Endo, Pro. She said might be better giving a more balanced amount throughout the day. I flag very quickly from being able to do small tasks to a burn and collapse very quickly. Horrible feeling. Any thoughts on the change over?

[PMRpro Ambassador in reply to Suffolklady]

Depends doesn't it? I know several who found HC harder to live with. And it VERY much depends on whether the PMR is still a factor because HC does NOT manage PMR inflammation well.

[Boss302Fan]

I suggest at this level doing 0.5 mg decreases, not 1 mg by doing so reduces intensity of potential flare should you dip below what’s needed to control the disease. I would continue with the 10% reduction step cutting pills as necessary (0.25 mg drops) when you reach 2.5 mg and staying with that amount until you reach zero. Again, it reduces the intensity of any potential flares, doesn’t require going higher than the old dose (if you respond quickly) to recover from flare and the more gradual adjustments gently eases the adrenals reducing chance of AI or if so, symptoms would be less severe.

I had no issues with AI doing this. PMR lasted 3.5 years, tapered from 80 mg/d to 0.

[Chiqui1950]

I am so grateful for this site! Thank you all for sharing your experience your challenges, your questions and your progress about tapering! the dialogue was most helpful and informative---Thank you Pro for being there to give us your expert advice!

[Dydee]

Sorry I'm late to the discussion but thought I'd add my experience too. PMR diagnosed in June 2020 and started with 40mg Pred tapering to 10mg in 10 days by my GP. Over the next 2 1/2 years I tapered to 6mg very slowly and only had to pop back up a couple times going down from 8mg but was in no hurry to go down further for awhile. My latest taper is 5.5mg every third day with 6 in between for 3 weeks and just started 5.5 every other day, 6mg in between. I can always tell if I go too low as my upper arms just start to ache like the old days. I have been lucky I guess not having PMR joint pain, just the typical fatigue a lot of the time. Now I take my dose when I go to bed between 11 and 11:30. Seems to work OK. Just purchased a Vibration Plate machine to help with muscle fatigue, back pain and bone loss from lack of exercise. At 80 hard to get motivated. LOL And I agree with all of you, I LOVE this group!!