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[Jamie751]

I was diagnosed with PMR about 18 months ago and am now down to a low dose of 3.5 mg Prednisolone. I did try to come down too fast a few months ago and regretted it. The condition still presents itself, some days worse than others but it is not totally disabling, just aching and depression. I am pretty active, teach Alexander Technique and ride a couple of times a week. I do find I get very tired, some days worse than others and that “active rest” as we teach it, is very helpful indeed.

[PMRpro Ambassador]

Well done - but might you feel better on a slightly higher dose? Anything under 5mg is low and doing no harm.

[DorsetLady PMRGCAuk volunteer]

Totally agree with PMRpro - you may just be on the borderline of controlling your PMR - so for the sake of a mg or 2 why not be more comfortable!

As we all know, even 0.5mg at this level can make a lot of difference - the doctors may not agree, but as patients we know it can!

[SheffieldJane]

I can really sympathise with you. It’s just not you is it? However, I still think that this disease has not done with you yet and you’ve still come down too fast. I would go back to where you were last comfortable and when things settle reduce very gradually in 0.5 stages, staying there for at least a month . Feeling achey and depressed is a miserable way to live. I am sure that I am not alone in wanting to know more about “ active resting”.

[Jamie751 in reply to SheffieldJane]

Thanks Jane - that’s really helpful. The last reduction was perhaps too swift: from 7 to 6, then 5 and now 4.5, all within the last 3 months. I will up it to 5.5 and see if that helps.

Active rest is sometimes called semi supine and provides a wonderful relief for our backs and indeed all of ourselves. Lie on a hard surface (ie a carpeted floor, not stone, wood or concrete) with your head on some books and your knees up. The idea is to let your spine settle on the floor, allowing your back to get longer and wider as it is wont to do. For me, paper back books about 3.5 cm thick is about right, but everyone is different, depending on the state of your neck and back. Your head is very heavy, and taking that weight off your spine will allow your back to get longer and wider, with a consequent renewal of energy. You will need something nonslip under your feet (a towel is as good as anything). Whilst lying down, try actively thinking about letting go in your legs, hips and ankles and allowing (not putting) your shoulders to settle towards the floor and thus your clavicles will settle down too. At least 15 mins a day is ideal, more is better! I hope that helps.

[SheffieldJane in reply to Jamie751]

That sounds great. I will be trying it. Thank you.

[Koalajane in reply to Jamie751]

Trouble is I am not sure if I would be able to get up off the floor

[borednow in reply to Koalajane]

My problem would be getting down in the first place, never mind getting back up again.

[Jamie751 in reply to Koalajane]

With respect, that’s why people come to us for lessons. You should find a good Alexander Technique Teacher near you ...

[Jamie751 in reply to Koalajane]

Please see my reply to Borednow below

[Hidden in reply to Jamie751]

Many years ago I cleaned for a woman who taught AT and she taught me this technique which I used for many years successfully. I can't do it on the floor anymore so can't use it but I can recommend it. Finding your perfect book is the key. Thanks for the reminder jamie751.🌻

[Jamie751 in reply to Hidden]

My pleasure

[Omanain in reply to Jamie751]

Thanks for this. Hope you feel better soon.

[piglette]

Do you think the tiredness is due to the adrenal glands having to start working again? I have got down to 5mg and am completely washed out. I did go up to 6mg and things were a bit better tiredness wise. I did not want to go higher as I felt the adrenal glands might like the opportunity of going off on holiday again.

[Jamie751 in reply to piglette]

I must discover the effect that Prednisolone has on my adrenal glands generally - do the steroids suppress the output of adrenaline I wonder?

[PMRpro Ambassador in reply to Jamie751]

As long as the dose is more than about 5-7mg pred the adrenal glands receive signals there is enough corticosteroid present in the body to function and they produce no more. Only below that sort of dose do they start to produce a top-up amount - the total needs to be the equivalent of about 7.5mg pred.

[Hidden in reply to PMRpro]

So if the Pred is only making up what we produce anyhow, then why do we bother at all getting lower than 5mg? As other posters have said, there are no significant side effects below 5mg?

[Jamie751 in reply to Hidden]

I’m pretty sure that giving up the pred when down to 5.0 would be a bad idea. I assume its a chicken and egg situation and its best to continue until the disease lets go. But how do I know that, I wonder?

[PMRpro Ambassador in reply to Jamie751]

The very slow end of the taper is necessary to get adrenal function hack. You should NEVER stop pred suddenly at any dose - it can make you extemely unwell at best and kill you at worst.

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

If you mean - how do you do you know the disease has gone? Simple answer you cannot be 100%sure until you have been off the Pred for a few weeks, maybe months, and no return of symptoms!

Although having said that I had GCA, no PMR, and when I got down to around 1mg, I awoke one morning and felt as if a weight had been lifted from me, and “knew” my illness had gone - nothing scientific I’m afraid, just a feeling. I continued reducing, first to 0,5mg then zero - not wanting to rock the boat in case I was wrong. That was almost 3 years ago.

However, even after finishing Pred it can take your system, including the adrenal glands, anything up to a year to completely return to normal.

[Jamie751 in reply to DorsetLady]

Thanks for that, very helpful indeed I guess I shall expire with old age before I come off the pred, but that’s not such a bad thing ...

[DorsetLady PMRGCAuk volunteer in reply to Jamie751]

Well, not necessarily!

I started at 80mg and it took me 4.5 years to get to zero (add in the 1.5 yrs pre diagnosis) giving total of 6 years from first symptom to last Pred.

I’m no spring chicken, but I’ve not expired yet - so there is hope 🤣😉🤣

[Jamie751 in reply to DorsetLady]

We all live in that ...

[PMRpro Ambassador in reply to Hidden]

Well - you'd better ask your rheumy that! Because it is generally them who are so desperate to get us off pred. More experienced doctors and patients don't have a complex about being on pred!

[Jamie751 in reply to PMRpro]

I understand from what you put that any dose below 5.0 pred does not stimulate the glands to produce additional corticosteroid. In other words, is there any point in taking a dose below 5? Perhaps the effect of pred is not to stimulate the adrenal glands to produce additional corticosteroid? We’re getting into the realms of pharmacology here I think! I will consult my man at Boots

[PMRpro Ambassador in reply to Jamie751]

No, other way round - above 5mg the body knows there is enough present. Only below 5mg is there any stimulus.

The dose below 5mg is acting on the inflammation - pred has an antiinflammatory effect, cortisol doesn't or has less or you wouldn't have a PMR problem. But cortisol is essential to life - you have to reduce slowly to zero to be sure that both the PMR is controlled and you have adrenal function. It doesn't always ramp up again as you would hope as you reduce and you need replacement therapy - as with thyroid or pancreatic problems. It does mostly return - but it may take a lot longer than some doctors think.

Not so much pharmacology as physiology...

[Omanain in reply to PMRpro]

I was curious about this too. Now I understand, thanks.

[Jamie751 in reply to PMRpro]

That’s really helpful - many thanks

[singingloud in reply to PMRpro]

What is the replacement therapy? Thanks

[PMRpro Ambassador in reply to singingloud]

Pred is a corticosteroid and does the same as cortisol - doubling the point of its use in PMR. Usually in Addisons they would probably use hydrocortisone but it doesn't work as well in PMR because it's effect doesn't last as long so you need 3x daily dosing.

[Noosat in reply to PMRpro]

I've dropped to 5 from 5.5 for the last few days. I wish I knew if the heavy, tired legs were from inflammation or just trying to restore the muscle they used to have.

[piglette in reply to Jamie751]

If you are taking enough steroids over around 7mg or so, the adrenal glands take a holiday. This happens after a couple of weeks of taking steroids. The steroids produce the cortisol on behalf of the adrenal glands!

[Quinacridone]

Thanks for all that info, I am off to the floor, if I don't write soon

it will be down to having a very elderly large dog on my face. x