Trying to reduce from 9mg to 8mg Prednisolone

[apttony]

Is it better to accept some morning pain while reducing, in order to encourage the body to start producing its own steroids?

[DorsetLady PMRGCAuk volunteer]

Personal choice.....but can you tell difference between a flare and Adrenals not working??

For me, my Adrenals just gave me unexplained fatigue, but no pains!

[SheffieldJane in reply to DorsetLady]

My diagnosed Adrenal Insufficiency seems to be making me full of life in the early hours, annoying because I am tired and listless the following day. I have not associated this aspect of my condition with pain though.

[apttony]

To some extent it must depend upon how you define a flare - a little pain, a lot of pain?

I don't know - what is the definition of a flare? A return of pain and stiffness when you haven't been having any? I only had no pain shortly after starting at 30mg / day and down to about 10 mg / day.

[DorsetLady PMRGCAuk volunteer in reply to apttony]

A flare is a return of original pains- usually minor to start with but obviously increasing as the days continue without enough Pred - allowing the daily inflammation to build up again.

Go back to the dose you felt okay - was that 10mg? Get things under control before you consider reducing again. Maybe slightly slower taper this time around as well.

No point or glory in not taking enough medication - your body needs what your body needs! Listen to it, not follow “the plan” relentlessly.

[apttony in reply to DorsetLady]

Thanks DorsetLady.

Took the decision during the night to go back to 10mg / day, which I have just done, and see how it goes over the next 7 days or so. If that stabilizes the PMR, I guess I will need to stick with it for a while before thinking about reducing again.

Hasn't anybody written "The Dummies Guide to PMR" yet?

Tony

PS: thanks to others who have commented through the night.

[DorsetLady PMRGCAuk volunteer in reply to apttony]

Good move. Get yourself back on track - no rush. This time of year is very often difficult - festivities and winter - some enlightened Rheumies suggest not reducing whilst it’s cold!

Then given it another go! Good luck.

[apttony in reply to DorsetLady]

Thank you.

[SnazzyD]

Hello, unless you are a person who doesn’t absorb much of your dose, 8 or 9mg is still too much for your body to think it needs to make its own. It’s usually about 5mg and below that it really starts if it is able, to make up for what it isn’t getting from tablets. I have read on here that people normally make about 8mg per day when not taking tablets. At this stage you need to be controlling the inflammation (potentially damaging) that is causing the pain in the mornings, so a reduction just for the sake of getting your adrenals working may not be wise currently. Things don’t really start happening until below 5mg which is a way to go yet.

[PMRpro Ambassador]

At the dose you are at that is probably not yet a factor - probably not before at least 7mg and mostly even lower. And no - you need enough to manage the inflammation. Your body's corticosteroid supply doesn't do that.

If you are taking too little to manage the inflammation being created each day, the left overs will, like a dripping tap, eventually fill the bucket and overflow. And then you will be back where you started - that is what a flare is. It can happen when you get to too low a dose to manage the daily dose of inflammation whether it is because you reduced the dose too far or whether the underlying activity of the disease has increased. Both are possible.

[apttony in reply to PMRpro]

Thanks you, PMRpro and SnazzyD,

That all sounds as though I need to up the dosage?

Stay on 9mg / day? . . . . . or even 10 mg- since even getting to 9 was not straight forward.

[PMRpro Ambassador in reply to apttony]

Only you can identify the dose that YOU need to manage the symptoms. It doesn't mean you won't get lower - just not yet.

[Meggsy]

I struck trouble almost 2 weeks after going from 10 to 9mg. I went back to 10mg for 2 weeks, then alternated 10/9.5mg for 2 weeks, then 9.5mg for 2 weeks. Have just begun alternating 9.5/9mg. No problems so far.

[dancersize in reply to Meggsy]

That was my first hiccup too. Back to 10 for a week then I tried 9.5 for the rest of the month

[apttony in reply to dancersize]

Thank you.

[PMRCanada in reply to dancersize]

Me too! Took a couple tries to get to 9.5 from 10mg. Staying here at this dose for another couple weeks before attempting a reduction to 9mg.

You may want to try tapering by .5mg instead of 1, now that you are below 10.

[Daisychain12]

Yes 9 was my watershed too 😭

[Brantuk]

My rheumatologist told me he can't measure my body's own production of cortico steroid until my daily dose of pred gets well below 7mg and nearer 5mg. I'm find it strange though - prior to my surgery last March, I had gotten down to 7.5mg with no probs - post surgery they put me back up to 10mg, and now I'm on 9mg, but finding it very difficult to reduce further to 8mg without some pain and symptoms reappearing (e.g. stiff neck, headaches, and stomach upsets). I've been stuck on 9mg for about 5mths now but keep trying to reduce every now and again - so far to no avail....

[PMRpro Ambassador in reply to Brantuk]

The dose of pred that manages your symptoms has nothing to do with the amount your body makes - as it doesn't make any while you are taking more than about 8mg which is the equivalent of the amount the body needs to function.

[hjbradshaw]

May I ask what the surgery was? It is always a good idea after surgery to increase the dose because of the trauma to your body. I recently had a fall and broke my femur: it took the orthopaedic doctors ages to listen to me that I needed to up my dose of pred because I was in agony and knew I was in a flare due to the extreme stiffness, but eventually they did and I was much better. Am now gradually reducing again and down to 12.5mg from 15, will go down again in a week’s time and see how I get on. Everybody (literally!) is different as to how they react when reducing or increasing dosages and although there are guidelines, they do ‘t Always work for those of us who are on long-term steroids, so listen to your body but also ask your rheumatologist for advice (do you have a rheumatology helpline?)

[apttony in reply to hjbradshaw]

Hi hjbradshaw, I had been suffering with gallstones since Nov 2016, and had the gallbladder removed in May 2018 - all that went very well. However, since January 2018, I had noticed that I was becoming more and more tired after a normal days work (ceramic potting, so not excesive!). Came out of hospital on the Monday after the keyhole surgery, with a pile of painkillers, felt okay by the Friday, so stopped taking the paracetamol, tramadol and ibuprofen on the Saturday, and went rapidily downhill. By the Sunday evening, I was struggling to sit down and stand up, reaching for books off the bookshelf, had to use two hands to reach to close the window lights, and then sliding my elbow across the table to reach the salt & pepper! Restarted the paracetamol and ibuprofen, and saw my doctor the following day, followed by PMR tests, which included 30mg Pred for a week. Then felt like a new man!

[xdbx in reply to apttony]

All of this suggests strongly to me that the surgery and associated pain meds and healing process and the the inevitable stress of all that on the body, even though It went well, would certainly have caused increased inflammation, probably quite a lot! That’s just how it works. So more PMR symptoms wouldn’t be surprising and the need for a higher dose of pred to mop up the extra inflammation.

[Brantuk in reply to hjbradshaw]

Hi hjbradshaw - I had a thoracic aortic arch replacement back last March. Prior to that I reduced the pred fine down to 7.5. They put it back up to 10 to help cope with extra inflammation from the op, but since then reducing below 9mg has been impossible. I do have a limited rheumy help line (only operates 4 mornings a week on a call back basis). But I'm seeing him again in early Feb. I was actually sympathising with the op who is struggling to get below 9mg like me, and as you rightly say we all react differently to pred reduction schemes - though sometimes it feels hopeless trying to account for all the circumstances that affect flares. Thx for your encouragement.

[Charlie1boy]

Hi,

An interesting post, which, after 4 years with PMR, I can relate to.

I'd been on 2.5mg since the beginning of November, and doing ok. However, as Christmas approached, with all its accompanying stress, I felt a bit of familiar pain returning. I upped my dose to 4mg, and hey presto!, all felt good again. I will slowly go back to where I was.

For me, no need to consult any doctor. The advice on this forum from the likes of PMRpro, and DorsetLady is enough to tell me what action to take.

9 to 8 was a difficult period for me, and many others, I believe, so I can but suggest that you will need to be very patient.

Good luck

Paddy

[apttony in reply to Charlie1boy]

Cheers, Charlie1boy, and good luck too.

[Pym1]

I’m really glad you asked this question and have been studying the helpful responses. Dear Lady Dorset (well, she should have been in the honours list!) and PMRpro really helpful as always. Don’t know where they find the time.

APT Tony we’re a similar age. My journey started 16 months ago and got stuck between 10-9.5 a year ago. Gradually got it down, with a couple of blips, to 6 by November but 5.5 was too much. I increased to 7.5 and stabilised for a month before coming down to 5 a month ago. It’s been difficult and the familiar aches and muscle tiredness have prevented me from enjoying my exercise.

I have some nasty dental work coming up and the dentist recommended doubling my Pred for a few days so I took my story to the Doc. She recommended going back to 10 for a week and then to go back to 7.5 as soon as I can. (where I was ok before) then to gradually start again.

She said that feeling well enough to do the cycling (and skiing!) I love was more important than trying to reduce pred too fast.

Warning! Now it’s permissible for fellas to talk about stress (!) I’m thinking that stress has probably taken more of a toll on me in the past than I’ve admitted. Things like long air + train journeys, planning disputes, complex business meetings these things never bothered me. Now they make PMR symptoms worse. So much more research to be done here as so many PMR sufferers seem have the same problem.

Good luck on your journey. 👍🏻

Pym

[GOOD_GRIEF]

Nope.

You need what you need to keep that inflammation under control. If you're feeling pain after 10-14 days, that's not wiothdrawal. You're not ready to drop.

Also, you should be stepping down by no more an .5mg at this point. More than a 10% drop will give you far more withdrawal pain and less progress. In the long run, you'll wind up taking more pred than less by trying bigger drops. You'll have to keep stepping back to higher doses.

When I got to 10, I started staying at a dose for 3-4 weeks before I attempted a drop. If particularly bad weather or a particularly physical day was in the office, I'd increase by .5 to 1mg to get through. If I got a cold, I went up for the duration and then some.

It's worked for me, but we're all different.

Just remember, running too far and too fast won't win the race if you trip before crossing the tape.

[apttony in reply to GOOD_GRIEF]

Hi GOOD_GRIEF. (What a wonderful pseudonym !)

Looking at the "Steroid Taper Application" and how the schedules are laid out, if you are only going to come down by 0.5mg, then this suggest splitting 1mg tablets in half - we don't seem to have access to 0.5mg tablets. Is that the case - splitting?

regards

TONY

[GOOD_GRIEF in reply to apttony]

Yeah, I've heard that several times but I think you can get uncoated 1 mg pills.

Once you're down this low, the stomach irritation is far less, and you can mix the coated and uncoated in a single dose.

[Hidden]

Have you considered going to 8.5mg using the DSMethod, I’m going down in 0.5mg currently sitting on 7.5mg but have a really bad cough so staying there for now. I also have very reluctant Adrenal Glands, I’ve had a Synacthen Test!

Best Wishes

MrsN

[apttony in reply to Hidden]

Hi MrsNails, I've been taking the 10mg /day for the last 5 days, and the aches & pains have disappeared, except for a problem within my left jaw bone, that ends up "making-a-noise in-the-ear" every time I move my jaw! Spoke with one of the GPs at my local surgery on Friday,(not my regular GP); and he suggested ibruphen, but that sounds contrary to earlier advice! Going to stick to the 10mg for a couple of weeks, before considering reducing again. When trying to go from 9mg to 8mg I was using the "Dead Slow Nearly Stop" method on a 38 day cycle. I don't recognise the DSMethod you mention. Can you explain please?

regards

Tony

[Hidden in reply to apttony]

Hi Tony

I’m glad 10mg has made a difference to you, I’d be inclined to stay there until you feel better, sorry DSMethod one & the same as Dead Slow Nearly Stop, sorry to confuse you.

My Wonderful Rheumatologist (RIP) always recommended going down in 0.5mg from 10mg, you could go from 10-9 (10%Reduction) then from 9mg go in 0.5mg.

I have plain 2.5mg so I don’t mess with cutting tablets just use 1mg, 2.5mg & 5mg to make up my dose.

I’m not planning to try to reduce to 7mg until the end of the month, with having a cough & it being January!

Hope that helps?

Best Wishes

MrsN

[Odosmum in reply to Hidden]

Mrs Nails, yes, I have the full range of pills too. It helps a lot.

[Odosmum]

I struggled for most of last year to reduce pred from 9mg to 8mg and had to keep going back to 10mg and then reducing to 9mg because of the return of the pain. I tried to use cocodamol and small dose (2mg) of Valium at night to try to get through it, but no good. In September I had a brainwave and decided to reduce by a weekly amount rather than a daily amount. It took some doing (mental maths!) but in December I managed to reach 8.5mg and have been stable since just before Christmas. Today I am starting the very slow reduction to 8mg. Wish me luck!

[apttony in reply to Odosmum]

Hi Odosmum, not sure that I like the idea of cocodaml plus valium, but a much slower approach to the pred reduction seems to be the way to go. Good luck.

Tony

[Hidden in reply to Odosmum]

Good Luck 🍀 on your next step to 8.5mg l think going by 0.5mg helps ✅