Tapering from 10 to 5 mg

[misschris]

Morning All,

I posted a few weeks back regarding tapering down on prednisone. My GP instructions were to taper down 5mg a week. I started I’m 30mg and have been tapering down 5mg a week, I have had no problems tapering and I am due to taper from 10 to 5mg this Wednesday.

After reading some posts regarding tapering and your Adrenal kick in when you taper to 7mg, I will be bypassing that as I am going from 10 straight to 5mg. Would it be wise to go from 10 to 7mg for a week and then to 5mg. I am just a bit confused what to do.

Chris

[PMRpro Ambassador]

7mg isn't a fixed figure - everyone is different. However - go back and read what was said in your previous post. Above all, take note of this:

"Your GP, however, has really rather over-egged the pudding and a "short sharp dose" of pred won't send the PMR away, he should have looked for the lowest dose that worked to relieve the symptoms and gone from there. If it were me I'd keep reducing at the 5mg a week down to 5mg and then slow right down, maybe trying 2.5mg for a couple of weeks and see if that is still working. It's a really low dose and you needn't worry about slowly dropping to 2 and 1mg. But at 1mg - I would stop and accept it as a sort of talisman!"

Your PMR never went away - and you were OK on 1mg/day. Your GP caused the flare by telling you to stop that very low dose. I think you are probably dine to drop to 5mg, you haven't been at the high dose for very long and your adrenal function should return to where it was at xmas quite quickly. But don't stop the pred again or you will be back where you were in about the same amount of time as last time.

[briantucker]

Hi Chris I tapered the same on Prednisolone, however when I got to 12.5mg I read advice to reduce by 2.5 every couple of days which was 2 weeks ago and I was fine initially but this week a few pains have returned which may or may not be related. Not sure about the adrenal kick as I don't know what this is?

[SnazzyD in reply to briantucker]

Every couple of days? On this forum? That’s quite fast. Why not 1mg drops every month? It’s the point at which the adrenal glands start to work again because the Pred dose is becoming too little for the body’s general needs. You don’t feel it, you just feel when it isn’t happening because you need cortisol and too little makes one feel pretty feeble. In its extremes, it can be fatal if Pred is withdrawn before the adrenal glands work properly. This is at different levels according to the person so there is no hard and fast number but it is below 10mg. The trouble is that the gland doesn’t just switch on like a light usually but sputters into life. It is nothing I to do with PMR, just the Pred dose being high enough to have made the body think it doesn’t needs to make the glands work any more. The system switches off temporarily but needs to come back on line. People usually get stuck around 7mg. It can make you feel achey, weak, emotional, tired, shakey, nauseated, tummy pain, to name a few.

[briantucker in reply to SnazzyD]

Thankyou for this. I didn't get the advice from this forum but it worked for me. Reading others its interesting about the loss of taste and also shaking as that's what I've also experienced.

[Hidden in reply to briantucker]

What loss of taste...? You have posted re covid 19. A main symptom is loss of taste.

[DorsetLady PMRGCAuk volunteer in reply to briantucker]

Adrenals

Quick explanation-

Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to the normal cortisol production by your Adrenals (does vary) - called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.

That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!

You must tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.

When we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.

For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function. But there is a test (Synacthen test) to check if they are capable of working - not if they actually, just if they are capable of functioning. GPs won’t usually refer you for test until you reach 5mg maybe 3mg and if you are having problems (fatigue, nausea etc).

**************

Cortisol and pred are not the same. The body normally makes about 30mg of cortisol per day though measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.

[tangocharlie in reply to DorsetLady]

Sorry about going off at a bit of a tangent but can I ask another question about adrenals please while we're on the topic? When I thought I was having adrenal problems at Christmas after my depo-medrone injection had worn off, my GP sent me to A&E. There they simply did a blood test to check my electrolytes and said everything was fine and therefore nothing wrong with my adrenals. Is that right or should I have asked for a synacthen test?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Even if you have a Synacthen test -it only shows the glands are capable of working - not that they actually are. Plus you need to be below 5mg Pred, some doctors want you as low as 3mg... and it means an outpatients appointment because it takes 2 tests - before and after an injection of ACTH (synthetic form of adrenocorticotropic hormone).

[tangocharlie in reply to DorsetLady]

Thank you, at the time I wasn't on any Pred. I have had synacthen tests in the past, when I was under endocrinology, about 3 years ago. I just wonder whether what they did at this time was adequate as I didn't feel reassured. And if I have problems with the injections again I might have the same problems. It was solved last time by going back on Pred.

[PMRpro Ambassador in reply to briantucker]

If you read it here I'd like to know where!!! Unless it was for a very specific reason we would NEVER support that - and at the dose you are at now we'd even raise our eyebrows at more than 2.5mg per month.

That is not the way to reduce in PMR - it will do to reduce pred in an acute situation. But in PMR you are tapering to find the lowest dose that manages the inflammation and as accurately as possible. To do that you reduce in small steps and you take at least a couple of weeks at each new dose to be sure it is still enough. Go down 2.5mg every few days and you will suddenly hit a brick wall of pain and have no idea at all where it all went wrong since it takes a few days before the inflammation builds up enough to be felt.

[misschris in reply to PMRpro]

I think I maybe be confused, what I read was that someone was struggling when reducing to 7mg, I know it’s different for everyone to what dose they get to when their body wakes up (so to speak).

I think that number stuck in my head to when mine wakes up and I did not want to put my body in crisis if I reduced too soon but I am only going on my GP instructions.

I am due to reduce Wednesday from 10 to 5mg, lucky for me I do have some 1mg of preds from earlier this year that I can use if needed.

[PMRpro Ambassador in reply to misschris]

Down to 5mg you are likely to be fine - but for most people they are still feeling their way after years on pred. You've already done down to 1mg once!

7mg is typically a problem for a lot of people but I suspect it is more coincidence than that it is 7mg rather than 8 or 6 ...

[misschris]

Thank you everyone for given me some advice, I think I will taper down to 5mg on Wednesday and then to 2.5mg and play it from there.

I think I got confused with someone’s post who said they were struggling when reaching 7mg that I thought that’s when the adrenal glands kick in.

Hopefully I can come off them quicker this time than the last time, without any problems, so far so good....watch this space.

[Hughie1951]

It’s all so variable. I started at 15mg, went to 10mg after three weeks. I wasn’t entirely happy about how I felt, although the aches may have been due to age and wear and tear rather than PMR. Reduced at 1mg every 3, 4 and now 5 weeks thereafter. Now on 6mg. Inflammatory markers are normal. I’m living much the same as I was before PMR, perhaps I might walk 3 miles rather than 5, but even so. I guess we’re all different and our medical advice varies but I’m happy to have taken the slow and steady approach.

My only slight regret was not being on a lower dose before my Covid jab to reduce immunosuppression and maximise my immune response. No idea how all that works out in the round.