Steroid reduction and supplements

[Suezybear]

I have PMR and now I’m down to 2mg prednisone I’ve been on steroids for nearly 2 years Tried tapering before and had a flair! This time I’m hoping the same doesn’t occur I have a very physical and stressful job and was wondering if anyone takes supplements that have helped with tapering I do already take Cal D. I have heard liquorice root is good but then you also hear that it interacts with steroids. Any advice please x

[DorsetLady PMRGCAuk volunteer]

If you’re down to 2mg within 2 years you done very well - so that’s good, not bad as you seem to think.

So in view of your job, I would be content and not rush to reduce any more - certainly for time being, but when you do may try this -

healthunlocked.com/pmrgcauk...

2mg is causing no side effect issues, and one prominent specialist keeps some of his patients at 2.5mg for up to a year.

Supplements aren’t likely to help tapering per se, and no liquorice....can affect blood pressure.

[Suezybear in reply to DorsetLady]

My consultant reduced me from 5mg for a month then 4mg followed by 3mg then my current 2mg for a month then he’s advised 1mg for a month then off steroids as by then I’d have been on steroids 2 years Just wary of having a flare as I’d tried this previously x

[DorsetLady PMRGCAuk volunteer in reply to Suezybear]

Oh dear, another Rheumy with the opinion that PMR lasts only 2 years........it does for some, but for an awful lot of of people it lasts a lot longer - anything up to 6 years.

Plus 1mg a month under 5mg is really too quick, 0.5mg is much better.

So what exactly are you on now, and how do you really feel?

[Suezybear in reply to DorsetLady]

I’m on 2mg atm and I’m due to go down to 1mg 7th January for a month then zero I feel ok ish I do have a very physical job and this time of year very busy lots of hours and stress so I can’t say I’m without pain and fatigue but also thinking is it PMR or just the amount I’m doing now x

[DorsetLady PMRGCAuk volunteer in reply to Suezybear]

2mg to 1mg is too big - 50% difference - try 0.5mg - and a slow taper as I posted. From 0.5mg to zero same - but some find that a bit more difficult.

Doesn’t sound much does it -1mg or 1/2mg reduction which is what the doctors think....but your illness may not agree!

Fatigue could be your work, your illness or your Adrenals struggling to get up and going again - 3 good reasons to go very slowly with your reductions.

[Suezybear in reply to DorsetLady]

So when I come to my next reduction in January from 2mg you would advice doing 1 1/2mg instead then 1 1/2mg to 1mg I’ve just looked back at my notes I started on 15mg 9th May 2019 when I first saw a Rheumatologist x

[DorsetLady PMRGCAuk volunteer in reply to Suezybear]

Yep 2 to 1.5, 1.5 to 1,

1 to 0.5 then hopefully

0.5 to zero.

[Suezybear in reply to DorsetLady]

Thank you so much for your advice It was because of your advice last time that you advised me I could have been having a flare and advised to go back to the lowest dose I’d been on and it confirmed after few days it had been a flare as soon as I was on Preds pains and stiffness went😊 Now I’m starting over again I’m just so wary of it happening again x

[DorsetLady PMRGCAuk volunteer in reply to Suezybear]

Well hopefully not, and without wanting to sound like a broken record, the slower you go, the less likely to flare......but if your illness needs a certain dose, it needs it!

[PMRpro Ambassador]

Liquorice is not recommended together with pred - it increases the level of pred in the body and so can increase the adverse effects. Doubt it matters much at 2mg - but then, at 2mg I wouldn't be worrying about speeding up tapering. At this stage it is adrenal function that you are worrying about and you can't speed it up whatever adrenal insufficiency sites might say.

Your rheumy is crackers - that is a short cut to trouble if ever! There are plenty of people who were fine at 1mg but when they stopped the pred the PMR symptoms were back in a few months, sometimes 1 month, sometimes longer, and it was harder to get control second time around, especially if it was ignored/denied.

For half of patients PMR lasts between a year-ish (only 1 in 5) and just under 6 years. The two years applies for about a third so the chances are you need longer than that. I'd class PMR patients in maybe 4 groups: short (1-2 years or so), medium (4-6 years) and two sorts of long where some just have PMR that doesn't go away and others have repeated shorter episodes. Both those last groups could be subdivided again. There is no way of knowing in advance which you are going to be in.

If keeping patients at 2mg or so for some time is good enough for Prof Dasgupta it should really be good enough for others - especially at only 2 years. My own world-name in the field rheumy says he has plenty of people with Long PMR but most of them are at low doses of pred that he doesn't worry about.

[Suezybear in reply to PMRpro]

So on 2mg my adrenal function should be ok? Would it have kicked back in now I’m on a lower dose ? I must admit to finding PMR one of the most complicated conditions I’ve known! I had a rare condition thorasic outlet syndrome where I had to have ribs removed muscle removed arteries redirected took a while to recover with physio etc to get full use of left side but that was still not as complicated as PMR 🤦‍♀️

[PMRpro Ambassador in reply to Suezybear]

Not necessarily - one lady on the forum FELT fine at 2mg but her rheumy ordered a synacthen test which found her adrenal function and production of cortisol wasn't low, it was zero, resulting in needing 5mg pred for life (she didn't get on well with hydrocortisone). Without a test you cannot know.

It doesn't KICK in , it gently increases as the dose of pred is reduced slowly. More like the toilet cistern filling up slowly rather than tipping a bucket of water in all at one. It isn't just the adrenal production of cortisol - it is a very complex piece of physiology called the HPA axis, the hypothalamus, adrenal and pituitary together with various hormones and stuff all have to get into balance to be working properly and reliably. Even after stopping pred altogether it is thought to take about a year to get to that stage.

I don't find PMR particularly complicated - there are far worse things out there in autoimmune land and if you have to have an a/i disorder PMR isn't bad: doesn't kill, doesn't cause lasting damage to joints like RA, and unlike most a/i disorders, it does burn out and go into remission for probably 95% of patients and can be managed pretty well with skilful management of pred and lifestyle. I have atrial fibrillation - worries me more than a flare of PMR.

[Suezybear in reply to PMRpro]

That’s for your advice I don’t know what PMR suffers would do without this site as GP’s don’t tell you anything about condition it’s just take Preds and get on with it !

[PMRpro Ambassador in reply to Suezybear]

They've never actually had it and really do believe that once you are on pred everything is fine. If a GP does develop it at some later point their attitude often changes - one apologised to us for how they had treated their PMR patients! We, on the other hand, have walked the walk before talking the talk.

[FRnina in reply to PMRpro]

Once again PMRpro thanks so much for your clear explanation about how things work. Indispensable!