Reduced too low

[Lovetobe]

Hi I've filled in my bio now so hope that helps with my question.I've been slowly tapering since Jan from 2mg and I got to 0.5mg 4 weeks ago.

If im honest, I've tried to ignore it, but, since 1mg but I've noticed the tell tale shoulder and upper arm pain etc.

Whilst waiting for doc appointment, I put myself up to 5mg, I have noticed a big difference, but my question is, is this going to affect my adrenals, which on my last synacthen test 4 weeks ago , results today, my adrenals are normal function.

Goodness knows what causes my fatigue 🤷‍♀️

Should I slowly drop back down again ?

My doc appointment was cancelled today and I was given a phone call. I didn't tell her I had taken 5mg again, she just said I should of been off pred by now, because of the side effects, makes me laugh as I've never been looked after at all by them since getting pmr.

So my question after waffling on is how do I taper now from 5mg or should I stay here for a while so long as it doesn't mess my adrenals....im confused 🙄

[DorsetLady PMRGCAuk volunteer]

Depends how long you have been at 5mg? If for less than 14 days you can drop back down quite easily but I’d say to 2mg or 2.5mg and then stick there for at least a couple of months, maybe longer. There really is no rush.

If longer than two weeks then you maybe need to go a bit slower.. say drop 1mg a month -again to 2mg - you probably don’t need to go ultra slowly - but you’ll just have to see.

Not sure you can say your adrenals are normal whilst still on Pred and it can take up to a year after finishing Pred for them to be 100%.

Adrenals not working correctly is what is causing fatigue -another reason to stay put at a low level for a few months. Plus your PMR is still active despite what GP might think!

[Lovetobe in reply to DorsetLady]

Hi thank you DorsetLady for your prompt reply I've been on 5mg for 10days.I haven't had the letter from synacthen test results yet I just called the secretary and she said they were "normal " but yes I understand entirely what you say about them!

I do know really that I'm not rid of pmr sadly I was just hoping after 3 years it had done one and left the building. Tks very much as always for your advice which I will follow x

Tk

[PMRpro Ambassador in reply to Lovetobe]

"Normal" just means your adrenals CAN produce cortisol and do so in response to a big kick of artificial ACTH! It doesn't mean the entire set-up of hypothalamus, pituitary (which produces ACTH) and adrenals is working smoothly day by day. That's why you have the fatigue - plus the underlying cause of the PMR symptoms is still there and producing inflammation, albeit less and quickly dealt with by the pred.

DL has said all I'd say. If you were fine at 2mg you can drop straight back there now if you feel able, no need to taper. And then slow, slow, slow slow, slow for the next steps.

[Zebedee44]

Hi, I am in much the same situation although still at 3.5mg and struggling to taper below that. The synacthen test confirmed that my adrenal glands can return to normal function so I know I must give them every chance by a slow slow taper but the fatigue is horrible and I’m hating feeling so pathetic!

Increasing your daily dose to 5mg might get you over the temporary hurdle of lingering inflammation from too low a dose but will not help return of your adrenal function I’m afraid. It’s a case of slowly slowly catchy monkey at this stage to get the adrenal glands up and running.

It’s no use your doctor wanting you off pred and forcing the issue, your body has to recover in its own time.

[SnazzyD in reply to Zebedee44]

It sure can feel relentless and will never be the same again! It really is a giant leap of faith that one day there will be more in the tank.

[Zebedee44 in reply to SnazzyD]

Eight years in and I hoped the end was nigh! But it seems this is just the start of a whole bunch of new problems of which PMR is just a small player.

[SnazzyD in reply to Zebedee44]

Indeed. It is assumed that low doses are when you will find your wings again. For many it just isn’t the case. I was told I would “feel human” again under 10mg and at 9mg I could have believed it.

[SnazzyD]

Firstly, PMR will have to trump whatever your adrenal recovery plans are. I get why you didn’t tell your doctor but you will need to be honest with them because it’ll soon be apparent that you are nowhere near zero and they do need to keep prescribing what you need. I had to stand my ground several times but it wasn’t easy. At one point I did have to point out that they had left me to stew for 6 months early in my GCA as I had had no follow-up so it was a bit rich to tell me off for being only on 18mg and listing scare stories about side effects. The effort of that made me cry once I got out but I felt I was in control and had nothing to hide. In your case, do they expect you to ignore your pains and keep reducing, only to risk having to increase even more if it takes hold? It’s not as if you are still lingering around 10mg is it?

Whilst tests tell you what’s going on adrenally in the main, I found that it didn’t really help to know what my day to day experience was like except when looking back to compare fairly different numbers. For example, I knew I felt improved at the 1.5mg Pred test level than the one at 4mg previously. Although we say up to 14 days is fine for increasing dose, I found mine went back to sleep more readily than that. To be honest you have to go by symptoms to know how yours are doing. Just because your Synacthen test says it’s ok on the day, it doesn’t mean the adrenals will keep paying out all day every day in every situation. I still felt very easily tired for over a year after Pred stopped and could trigger a crisis if I did something out of the ordinary.

Increasing for your PMR means a bit of a setback for Operation Adrenals but what can you do? It can take many months to get the adrenal axis going properly so very slow reductions are needed which is great for lingering PMR anyway.

[AtopicGuy]

Thank you for filling in your Bio/Profile. I'll not repeat the answers of others, but the risky side effects of steroids massively reduce once you've tapered so low.