Just can't seem to taper past 3mg of Prednisone.

[RaisinBran]

I am going on 2 1/2 years on Prednisone. I have tapered down from 15mg to below 1mg three times and haven't been able to make it. It took me an entire year to taper from 3mg to below 1mg, while tapering 1/4 mg below 1 for a month at a time.

I am on 3mg for three weeks now coming down from a trial of 8mg for two weeks and feel terrible. Exhausted every day, upon waking in the morning, I want to go back to bed immediately. Legs hurt, knees hurt, shoulder hurts and I'm tired. I'm sorry, I asked this before, but I'm thinking of going up to 5mg for a couple of weeks and see what happens. Are there any other suggestions I can try. I am mtg with my Rheumy in early February.

Thanks group, I really appreciate all of your ideas.

[piglette]

It sounds like you might have the deathly fatigue from your adrenal glands. I stayed on the same dose of pred for several months as I felt like a zombie and then things started to get better.

[SnazzyD]

On the face of it, it sounds exactly like adrenal insufficiency. Like piglette I was like that for months, in my case about a year. Sadly, if the adrenals are a bit sluggish, whichs is what is causing these symptoms, the only way is to stay low. This helps the body pick up signals that the cortisol level is too low. Unfortunately, the instinct is to do what makes one feel better and increase the dose. This has to be done carefully because if you go too high, the Pred level becomes high enough to flood the body with enough artificial steroid for the body to think it doesn’t need to bother. In many, 8mg is enough to do this so you go back to square one.

This can be a long process and isn’t treated like a PMR flare where you pop up the dose for a wee while and go quickly back down expecting to feel better. It can make one feel worse for the reasons just said. The only reason you would do that by a few mg is if your body is undergoing extra stress like illness or shock or a long journey etc and your adrenals aren’t coping and you risk an adrenal crisis.

So what is the balance? You need to be low to challenge the adrenal glands with low cortisol/cortisone but you need to be able to keep living safely. I played it by ear half the time, accepting I wasn’t going to feel great from the moment I woke up. However, I had to reduce my daily stress where possible to avoid putting too much demand on the body. What one does have to do is slow the reductions right down to make the deficit requiring less of a big catch-up.

All this is if your PMR is in control. With that we say, don’t push through feeling bad but with waking the adrenal glands it’s a case of feeling rubbish for a time but within reason. Reading one’s body is key and it can be a bit confusing deciding whether physical discomfort if due to an impending PMR flare or adrenal insufficiency. My experience of low adrenals is a general fluey ache anywhere and tired muscles with little stamina..

So if you go up to 5mg you will likely feel better because the adrenals are being let off the hook and their job is being done by the Pred. At 5mg a below, I was introducing 0.5mg over 8-14 weeks. If you are boiling up for a flare of PMR too, a really slow reduction will help that too because you can have both at the same time.

[RaisinBran in reply to SnazzyD]

Thank you Snazzy, that was very helpful.

[DorsetLady PMRGCAuk volunteer]

Sounds like a combination of adrenals struggling and too low a dose. And if you struggle each time you try and get below 3mg, that’s your body telling you your PMR still needs at least 3mg… may not be for forever, but certainly for longer than you think… and at 2 and half years into treatment that may well be the case.

Maybe you need a little extra [but only a little]…so maybe 4mg - and stay there until after you’ve seen Rheumy giving adrenals a chance to get their act together . As many have found with adrenals, you sometimes just have to get through it.

[RaisinBran in reply to DorsetLady]

Thank you DL! As always, that was very helpful-Thank you!

[PMRpro Ambassador]

You are NEVER tapering relentlessly to zero - you are titrating your daily dose of pred to find the lowest effective dose of pred that manages the ongoing daily shedding of inflammatory substances in the body that underlies the symptoms that we call PMR.

PMR is not a disorder where you take pred, it combats all the inflammation and you stop taking pred. It is a chronic disorder and can last for years, only about a third of patients are off pred in 2 years and half need ongoing pred for well over 6 years though usually at a low dose.

While on higher doses of pred the HPA axis (hypothalamus, pituitary, adrenals) is suppressed and no cortisol is produced since the pred is enough to cover the body;s requirement. Once you get to lower doses of pred, that HPA axis must come out of hibernation and only lower pred dose will encourage that but even then it may take months to wake up and get back into regular operation. In older patients it may take longer or even never properly and reliably function again.

What you are describing fits with poor adrenal function - and you and your rheumy need to consider whether you need a decent dose of pred ongoing and accept that or whether you want to aim for the 3mg you have reached before and wait for your adrenals to wake up again if they can.

Snazzy has explained it all so I won;t say it again.

[RaisinBran in reply to PMRpro]

Thank you PMRpro, Your analysis is always spot-on. I have been diagnosed by one cardiologist indicating I need a Pacemaker, two other cardiologist, including my own say I do not need one now. I have Bradycardia with a resting heartrate between 35-40. My nocturnal heartrate has gone as low as 29 and I have stopped breathing for 8 seconds on two different days. The reason I bring that up is I show absolutely NO symptoms at all, other than feeling tired which could be the cause of my Prednisone, PMR or my Bradycardia. I'm trying to get to zero with my Prednisone, so I can rule Prednisone out for causing my fatigue. I cant do anything about my heartrate unless I get a Pacemaker and I'm just too active daily and afraid that because of being active, I may pull out the leads and the wireless Pacemaker has it's own problems. That is why I am trying to get off of Prednisone because that is the only option that I can control. However, through this site I have learned the dead slow method and have taken one year to taper from 3mg to zero with 1/4 of 1mg drops. That stll didnt work.

[PMRpro Ambassador in reply to RaisinBran]

I think you need to sit down with a doctor and discuss this properly and, I suspect, sort out a few misconceptions you may have!

Now what sort of active are you talking about? What sort of left arm movement do you indulge in? I have a pacemaker and the last thing I think of is whether the leads will dislodge. The more common cause I suspect is twiddlers syndrome - I can't even FIND my pacemaker, never mind twiddle with it! Even the medics struggle. Once the box and leads are in position and the tissue around them healed, they don't just "slip out". And arm movement events are vanishing rare.

If your adrenal function is poor, then getting off pred is going to introduce far more likely and concerning events than a rare event of lead displacement. Adrenal crises are life-threatening. It doesn't matter how slowly you taper - if your PMR is still there or your adrenal function is poor then there is a limit to how low you can go without problems. Real, life-threatening problems.

With your heart rate and apnoea episodes, I would be seriously considering a pacemaker, inserted by a competent doctor.

I have just had an ablation done, The medics have been whinging about swollen ankles and wearing compression socks since before the atrial fibrillation went really nuts 13 months ago after a Covid jab. Now it is gone I feel so much better and the ankles are as skinny as mine ever managed. If only they had done it sooner rather than later but I don;t think they actually appreciate how much effect an inefficient ticker has even on the patient with few symptoms.