Around that magic 4.5mg! :(: Hello all. I recently... - PMRGCAuk

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Around that magic 4.5mg! :(

CornishCliff profile image
10 Replies

Hello all.

I recently subscribed to this forum. I'm male, 52 years old.

I was 'diagnosed' with PMR in August 2015. Started 15mg Pred., which sorted everything. A couple of hiccups reducing over time, but after returning to 15mg last year ( June 2016), I have managed to reduce to 4.5mg.

I've had to adjust lifestyle overtime accordingly and I've been aware of some fatigue and little niggles the further down the road I reduce, but since passing 5mg (classic!) I have had a much more pronounced symptoms. Fatigue, pains (very bad middle toe for about 6 weeks), quite down and emotional. All quite difficult to contend with and making my family (wife and 2 young children) upset.

I've stopped at 4.5mg and been there for about 3 weeks. I was reducing at 0.25mg a week and stopping at a particular dose if I felt I needed to until I reckoned I could move on. I also suspect that on one day I accidentally took 1mg too little in the dose.

My question is, in experience, do people find that if your not completely incapacitated, do you stick at that level for longer and look to see if symptoms subside over a couple of months? I'm naturally fed up with Pred., and don't want to increase doasge again and night times are not a bother which makes me wonder whether a lot of it is withdrawal effects and that I should be concentrating on my wellbeing from that point of view?

Sorry for the word soup. :)

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CornishCliff profile image
CornishCliff
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10 Replies
markbenjamin57 profile image
markbenjamin57

Hi Cliff, greetings and welcome to the forum.

Sorry for this long reply, but if it helps:

I have a similar trajectory to yours - dx with PMR in August 2015 also, started on 30mgpd Pred and now down to 4-ish after a bit of a roller coaster journey both tapering and symptoms-wise.

The wisdom is that 7.5 mgpd +/- is the body's typical production of natural cortisol, the 'physiological' dose. At around or below this level of Preds, the adrenal department is being encouraged to 'wake up' again after being supressed by the preds for a long time. This often seems to be a sticking point where people struggle to reduce the daily pred dosage and have flares in PMR symptoms and / or steroid withdrawal symptoms - which can be difficult to differentiate. In your case, it sounds like pred withdrawal symptoms given the dosage you're currently on.

The experts here recommend the DSNS (Dead Slow Nearly Stop) tapering method where you should only ever reduce by a maximum of 10% of the previous periodic dose (e.g. monthly) - and only if the PMR symptoms are under control. This is backed-up by some research to indicate that patients who follow DSNS report a lower incidence of flares.

Also, it's well known that PMR symptoms (pain, stiffness, fatigue) can be amplified by factors like stress, physical over-activity (in the PMR context), viruses, comorbidities, and even the weather! So, the tapering process can be quite a tricky tightrope to walk, and the generally accepted advice is to be 'symptoms-led' in reducing at any level: i.e. if you're getting relapse and / or withdrawal symptoms, stay-put on a level plateau or even nudge the dosage up a little until you feel better.

Many people here report that reducing the preds at these lower dosages (< 7.5 mgpd) can be very slow indeed. It's confusing because the mind is thinking 'I'm nearly off them!' when in fact you are at quite a critical stage in the reduction process. As The Aunties (experts) here say, it's not a race to Zero. I can vouch for this too...

That said, us minority of men with PMR seem to fare better in the process overall. I recently managed to drop quite steeply from 7.5 to 5.0 mgpd (n.b. not recommended) in one 'hit' and felt great despite this (almost symptoms free - see my recent post). However, and as many here will confirm, it's easy to get carried away when feeling better and resume 'business as usual' physically when the body is still in fact recovering from quite a serious, chronic auto-immune illness. It's said that, even at Club-Zero Preds, it can take 12 months or so for the complex adrenal set-up (HPA axis) to get back into its normal balance, and there is still the risk of flares in PMR symptoms if you don't take things easy in the meantime.

So, I think you've got the right idea - listen to your symptoms, err on the side of caution Pred wise (even if you don't like it!) and be patient. The inflammatory process of PMR does have a mind of its own and burns out (goes into remission) of its own accord - we just have to roll with it in the meantime. Best case for remission is said to be 2-3 years, for about 25% of patients I think. For some, it takes a lot longer, unfortunately.

I'm sure the Aunties will be along soon either to confirm my thoughts (or put me straight on the details - as they often do!). I also recommend Kate Gilbert's excellent book, 'Polymyalgia Rheumatica and Giant Cell Arteritis - a Survivors' Guide', if you want to get chapter and verse on all things PMR.

Keep us all posted in the meantime - you're in very good and trusted company here.

MB :-)

TooSore profile image
TooSore

Hi, from my own personal experience- I seem to have one of the more sensible rheumatologists. Once I got down to about your levels it seemed to take me about 6-8 weeks for each taper. (.5mg) Even though the plan was for a month something would always happen (cold, sprain, muscle knot). My doctor then kept me at 3mg for 3 months so "my body could catch up". Other people talk about pausing like that at 5mg. It sounds like that's what may be needed in your case. No use taking the stuff if it doesn't make you feel better.

I just posted yesterday and got reminded that even at low levels we need to have patience and remember to pace. I think because I am generally feeling ok and seeing the light at the end of the tunnel I have been pushing a little too hard.

Good luck on your journey and remember how much energy children take out of you. It's what fuels theirs!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi CC,

Mark has given you good advice (pat on the head from one Auntie).

Around the level you're at would think most of your problems are Adrenal Gland related - can certainly relate to the fatigue personally -and no children in sight!

It just a matter of reducing slowly, both in time and dose - that gives Adrenals time to spark again! Difficult I know with your circumstances - but try to rest as much as possible, pace yourself - and a little TLC goes a long way!

Although you've had PMR for a couple of years, it may well be still quite active, so the dose you're on may not be enough. I know you don't want to increase, but there is no point being on too low a level - waste of time. You need to get any inflammation back under control - and then keep it there - if that means a mg or 2 more then do it! No point in being macho about pain - don't decrease if you have symptoms -listen to your body.

I'll repeat what I said to some one yesterday- Pred is like a sticking plaster over a wound - it doesn't cure the wound per se but it protects it whilst the body does the mending. If you still have PMR then you need the correct level of Pred to control the inflammation caused by the underlying illness.

Take care

CornishCliff profile image
CornishCliff

Thanks everyone for the helpful and coherent replies! Going to stick where I am, I think, for a few weeks before considering bumping back up. It's also important for me to check whether any depression/down-ness is response to/effect of withdrawal. Considering that I have lost some (not so close) family and a dear friend in the last 3 weeks, I don't want to take the Dr's advice of anti-d's (citalopram) that take 6 weeks to level when I may just balance out naturally anyway. Onwards and upwards!

markbenjamin57 profile image
markbenjamin57 in reply to CornishCliff

No worry Cliff, all part of the service here - good to share these things ;-)

As for the 'D' word - it sounds like a perfectly natural reaction to your other recent life events and losses, and I'm sure Time will do its healing work as effectively as any anti-depressants can. And.. I'm certain that if you're feeling a bit ragged already (with pred reductions etc), it all adds up.

As for your N&D - often, even those closest to us can't get their heads around PMR when we look well on the surface. All I can suggest is try to educate them about PMR too, so that they can really understand what goes with it (e.g. fatigue, low mood etc). Once they understand things better, I'm sure you'll all get through it together.

Nice to hear Onwards and Upwards - one of my favourite (and, with PMR, well-used) phrases!

Try to keep smiling through the tough bits - quite a few of Us Lot believe it can be one of the best therapies of all...

MB :-)

PMRpro profile image
PMRproAmbassador

You are never reducing relentlessly to zero - you are reducing looking for the lowest dose that manages the symptoms as well as the starting dose did. If you have got to 5mg feeling pretty good and 4.5mg leaves you feeling rubbish - then go back.

You need the dose that is enough to wipe out the newly produced inflammation that happens at 4.30am - and if it isn't quite enough then there will be some left over. Like a tap dripping into a bucket, eventually it will fill up and overflow - and you will have a flare on your hands and possibly have to go back to a much higher dose. It isn't worth it if 1mg more does the job properly - because below about 7.5mg you are on a dose with few side effects as it is much the same as the body produces naturally and is essential to life.

And a pat on the head for Mark from me too...

markbenjamin57 profile image
markbenjamin57 in reply to PMRpro

Thanks PMRpro and DL - I feel truly 'patted'! ;-) :-D

SheffieldJane profile image
SheffieldJane

Million dollar question that we wrestle with CornishCliff. 1 mg is a lot at your stage, if you did indeed miss it this could be the culprit. I might try a controlled experiment with a bit more, particularly if I had become the big bad bear in the house. 🐻

hi cliff I read this earlier ti day. I am so happy you have been to.drs over your reactive depression.

You mention your young family and how this is all very upsetting. Sometimes mentioned that time is as good as anti-depressants. I don't necessarily agree with this. Depression if left untreated is an imbalance in the way chemical are processed in the brain. If you still feel this way in a few weeks I hope you revisit your Gp for access to bereavement counselling, cognitive behavioural therapy or ssri to treat the imbalance. Hopefully as reactive it may start to decline, but you are in vulnerable group of people in relation to depression so need to seek help again if low mood sticks around.

You have another tool to check and see if it is making PMR/steroid withdrawal that is impacting on mood etc. Up the steroids for a couple of days and you will have an answer. at the moment you are saying all these things are happening but you are resisting treatment..sorry to be so blunt but you need to be kinder to yourself and treat serious symptoms.

Elaine-W profile image
Elaine-W in reply to

What an empathetic and thought provoking reply. A reminder once again of the value of this group. We tackle tough aspects of these illnesses with straight no nonsense advice when required and lots of humour when appropriate. Thank you xx

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