cutting steroids down from 5 mg

[Polywhat1]

is there any advice on cutting down steroids from 5mg? I’ve gone from 15-5 ok so far.

[SnazzyD]

The general advice is very slowly and no more than 1mg at a time or better still, 0.5mg. However, specific advice based on no information about your journey is going to be tricky to give for those replying. Can you say when you were diagnosed, how you have reduced up to now, how your symptoms have behaved and how you feel generally?

[Polywhat1 in reply to SnazzyD]

Thanks for responding. I was ill last January. Diagnosed March. 15mg to 5 mg over that period . 1 mg at a time each month. I was going to continue lowering 1mg but wondered about this being 0.5 mg. Is it trial and error? My symptoms went once I started steroids. I’ve been generally OK. Just feel not so strong in my lower body and more fatigued but this could be my age!

[DorsetLady PMRGCAuk volunteer in reply to Polywhat1]

Fatigue is likely to be adrenals realising they have to start working again, and are struggling to do so [first link explains] and a much slower tapering plan and only 0.5mg a time will help them and your PMR .

healthunlocked.com/pmrgcauk...

this gives selection of tapering plans -

healthunlocked.com/pmrgcauk...

[Polywhat1 in reply to DorsetLady]

Wow that’s great information. Thanks so much. I feel the lowering of steroids at this point needs to carefully managed.

[DorsetLady PMRGCAuk volunteer in reply to Polywhat1]

It does.. many think [sometimes doctors included] that lower doses are a piece of cake… in fact it’s often more difficult - the percentage reduction is more.

So 1mg reduction at 10mg is 10% , at 5mg it’s 20%, at 1mg it’s 100%. It’s recommended as near to 10% reduction only - not always feasible, but as small as you can..

[SnazzyD in reply to Polywhat1]

Very much so. The impression often given is that low doses means close to zero means back to normal. Even without PMR concerns, your adrenal glands haven’t come back into full capability you can feel like you have nothing in the tank or it doesn’t take much to make you feel wiped out. I felt like that for many months starting from 7mg. The lower I got the slower I went but got there in the end. DorsetLady has given you good info.

[Polywhat1 in reply to SnazzyD]

I had no knowledge of work or effect on adrenal glands til I read that link. Really helpful if I feel more tired as levels lowered. I assume you just have to work through this? Thanks for helpful advice.

[SnazzyD in reply to Polywhat1]

If by work through it you mean take it as it comes with an open mind and being flexible, yes. If you mean push through determinedly not to let it stop you, then no. You are treading the fine line between keeping your Pred level low to hopefully trigger the adrenal axis into action and tipping into an adrenal crisis. You really have to listen to your body and if you are tired on a normal day don’t then go on a shopping trip expecting to feel ok. Increasing your Pred sets the process back but if you need a rescue dose you have no choice. It can out of the blue too so you don’t leave the house without your Pred. Rest when you need to and have plenty of patience.

[Polywhat1 in reply to SnazzyD]

Thanks so so much. Really helpful advice

[Hugh_Marc in reply to Polywhat1]

That’s an impressive reduction (if that’s an appropriate description). To get from 15mg to 5mg without flare ups is certainly a great accomplishment.

I was diagnosed late summer & have tried reducing from 15mg to 14mg recently but am getting aches again.

I have no advice other than not trying not to reduce too fast.

I know (from experience) that some doctors want to get the dose reduced as quickly as possible but they tend to forget there’s little practical alternatives to steroids for our condition.

[Kingcharlesdog]

Hi

I was diagnosed in March 2024 and have been on a slow tapering regime., which my GP supports. This site is so valuable and I read it most days. I started on 15 mg and went 12.5, 11,10 and then by 0.5 mgs every 4/5 weeks. Listening to my body and judging any aches . I am now on7.5 . Should reduce to 7 today but just been to dentist! So will reduce tomorrow.

I think it’s a case of listening to your body and it’s reaction to each reduction

IGood luck with your tapering

And thanks to all on this forum x

[Polywhat1 in reply to Kingcharlesdog]

Thanks

[PMRpro Ambassador]

You have done very well getting from 15 to 5mg in 8 months - half of patients take up to 18 months - so the other half take longer!! But the lower you get, the closer you are to the objective: the lowest effective dose. Even 1mg can be plenty to manage low activity disease - so from here on, slowly and small steps down. If you are really lucky you might get to zero as the illness burns out faster than you reduce. But there are no guarantees.

[Polywhat1 in reply to PMRpro]

Wow I didn’t realise that. I had help from dr friend who was shocked by my appearance and movement to question and request extra blood tests so think I got a quick diagnosis compared to some people. Thanks for your support.

[Angelsmummy]

Morning Polywhat,On DLs advice I am on a 7 week taper,at 0.5 mg a time.Am currently on 5 and 1/2 tapering to 5.Feel wiped out not having to do much to feel this way.the lower I get the more wary I get but slow and steady wins the race.Good luck,xx🌼😜

[Polywhat1 in reply to Angelsmummy]

Thanks . I’m thinking I’ll go to a 0.5 reduction slowly as want the process to go smoothly.

[Angelsmummy in reply to Polywhat1]

Well done you.Better safe than sorry eh?Good luck with it all Polywhat!xx😜🎄

[Polywhat1 in reply to Angelsmummy]

Thanks. Trying to decide on dead slow or Dorset lady tapering

[Angelsmummy in reply to Polywhat1]

Got to be your choice.,Seven week at half a mg is what Ishall stick to and

[Angelsmummy in reply to Polywhat1]

Sorry ,damn message went before Infinished…..🤬Inshsll stick st the 7/week taper and see how it goes!Good luck for whatever you decide.xxx😜🎄

[OldPenny]

Hi Poly what. Here's my two-penneth.

Slowly, slowly has been my mantra since I reached 5mg pred a day about 15 months ago. I've managed the taper by using the 5-day DSNearlyStop method. Because of the percentage drop increasing alarmingly (as explained by our DL) I've tried to minimise this effect by using a pill cutter, even on 500 microgramme tablets. So, for example, this January 2024 I was on 3.25 mg pred, 2.0 mg at the beginning of May and now I am on 0.25 mg, with zero in my sights before Christmas.

This has worked for me, despite being diagnosed with prostate cancer in April, undergoing radiotherapy treatment in September and continuing on hormone therapy for another year.

When I have felt unwell it has mainly been nebulous head and neck pain and finger/hand stiffness and pain, some dizziness and 'brain fog', mood changes (other than the other obvious side-effects from the radiotherapy). Hormone therapy or adrenals?

I have tried to keep active and my lower body has been fine so far, upper body not so good when overworked, but I don't think that PMR is active now.

Blood tests today for both PMR and PC markers...... OP

[Angelsmummy in reply to OldPenny]

Good luck with your prostate treatment Old Penny.OH had radiotherapy in 2008for aggressive prostate cancer,,Gleason factor of 8.5.Totally successful seeing as it was aggressive.Just come back now,but lucky enough scans,cytoscopy shows it is contained.Back on treatment but keeping our fingers crossed.Radiation side effects were not too bad for OHjust the constant tiredness of every day for 7 weeks for radiotherapy.Think the treatment has progressed a lot since he was diagnosed back then.Good luck with everything.xx🌼😜

[OldPenny in reply to Angelsmummy]

Thanks for your reply. Angelsmummy. Yes, things have moved on a bit and I had just 5 sessions of high-dose SBRT on the PACE NODES clinical trial for aggressive PC. Best of luck for your OH🤞

[Angelsmummy in reply to OldPenny]

Hi Oldpenny,now that makes me nostalgic,halfpenny,threepenny bit ,sixpence,and the ten bob note.,🤣So glad you have completed your treatment and hope you are ok.?Thanks for your kind words regarding my OH.He is on hormone therapy at present so as you say,fingers crossed!Take care,and good luck with the last bit of tapering.You are brave with that right on top of Xmas.,!xx🌼😜🤞🏼🤞🏼

[Hirondelle]

I was very happy to get to 5mg and was told to keep going. By the time I got to 3mg, I was absolutely exhausted. GP not interested so went to see wonderful private rheumatologist, who wrote to surgery asking for the morning test to see how adrenals were. The result was way below normal but the GP marked is as ‘abnormal but to be expected’ (which is what he always puts and is now called that by his patients). Sent results to rheumatologist who immediately referred me to endocrinologist - result after a test at the hospital -= no cortisol or as the endo said “you have no petrol in your engine”.

So I have Adrenal Insufficiency and live off steroids - which gave it to me. Ironic! Just be aware that if you are very much more tired than usual, you need to ask for the morning test (sorry, name escapes me at the moment). Good luck.

[PMRpro Ambassador in reply to Hirondelle]

Basal cortisol. Followed by a synacthen stimulation test ...

[Hirondelle in reply to PMRpro]

Thanks PMR pro- I was just about to look up whether Adrenal Insufficiency gives you brain fog…

[PMRpro Ambassador in reply to Hirondelle]

Probably - most things seem to!!!! Just the bleugh feeling of adrenal insufficiency tends to make it hard to concentrate. But yes, it is listed even by the more reputable sites that aren't riding the adrenal fatigue hobby horse.

[Hirondelle in reply to PMRpro]

Phew, thank goodness. I did see that too. My husband had early onset Alzheimer’s- first big sign aged 62- so that always hangs like a gloomy cloud…

[PMRpro Ambassador in reply to Hirondelle]

You aren't there yet!!! But I understand your fears.

[Sanekate]

My advice is take it ve-e-e-ry slowly and expect some ups and downs. I am currently on 1mg, and it has taken 2 years to get here from 3.5mg. Small reductions in dose can make a huge difference, and I have had to learn patience, and go back up if warning aches start. I am trying now to reduce to 0.5mg by dropping to that dose on one day a week for a month, then 2 days a week for the next month etc, so basically taking over a year to get (I hope) to zero. It is glacial progress, but PMR is in the driving seat. I'm lucky to have a GP who trusts my experience over generic guidelines.