Too ambitious! Or just stupid!

[Hughie1951]

I’ve had PMR for a year now. I’ve tapered from 15 mg to current 2mg. Reducing by 1mg every 4 weeks apart from the last reduction which was 5 weeks. Everything had been going very well, apart from some aches in shoulders and thighs and I’ve been able to lead a normal, active life. Horse riding, dog walking etc. On 3mg I realised I was just starting to struggle and on 2mg (for 3 days) I certainly am.

I know I’ve probably tapered too fast but I wanted to be on as low a dose as possible so that my response to Covid vaccination wasn’t suppressed too much. Subsequent blood tests have indicated a more than pleasing seroconversion.

I think I need to increase my dose, possibly to 5 or 6mg (or a bit higher?) and then aim for a realistic maintenance dose of 4mg. How quickly can you realistically taper from a reset dose to your suspected maintenance dose?

Haven’t run this past my GP yet.! I’d like to request inflammatory markers and maybe cortisol levels too. I’ve never seen a rheumatologist. I can certainly argue my corner but forewarned is forearmed.

I know there is a suggested taper protocol, written, I think, by Dorset Lady, but I can’t find the link.

I think I need to take this a bit more seriously now rather than thinking I’ll be off meds in August.

Be grateful for thoughts.

Hughie

[DorsetLady PMRGCAuk volunteer]

Hi, Maybe you do need to take it a bit more seriously! 😉..

ambitious- yes,

stupid - too polite to comment 🤣😂🤣

Couple of posts - first covers management of flares etc,

second tapering plan - have a read, and hope they help -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Hughie1951 in reply to DorsetLady]

Thanks, just what I need. Really was just following my GP’s instructions. The problem is they just don’t have time these days. That’s why this place is so essential.

[DorsetLady PMRGCAuk volunteer in reply to Hughie1951]

GPs don’t have time? not too sure about that to be honest. Some have become used to not seeing patients, and like other workers on long term furlough, have become accustomed to that. Not all obviously, but some.

More like, not understanding the illness.. nor the tapering.

[Hughie1951 in reply to DorsetLady]

I think you’re absolutely right. I was trying to be ………. tactful. This place has been the source of most of my understanding of PMR. Unfortunately when things seem to be going well you just carry on blithely. And then you hit a wall!

[Suffererc in reply to DorsetLady]

Agree. Plenty of time. Just used to working at a very slow pace and now can’t keep up.

[PMRpro Ambassador]

Think you have said it all! When you need such a low dose, then speed of tapering is immaterial to start with - but some people just can't manage it. You were aiming to find the lowest effective dose and you have done just that - probably 3.5mg, If you catch it REALLY quickly you might get away with 4mg straight away. But otherwise a few days at +5mg will probably sort it: i.e. 7 or 8mg for up to 7-10 days and then back to 4mg.

healthunlocked.com/pmrgcauk...

has links to all the tapering plans we mention, each a bit different.

[Hughie1951 in reply to PMRpro]

Hope it’s not me being thick.

+5mg fo 7 to 10 days then straight back to 4mg. Or taper back to 4mg at recommended taper rates.

[PMRpro Ambassador in reply to Hughie1951]

If you are at the higher dose for only a week you should be able to drop straight back to the lower dose - it isn't long enough to mess up adrenal function for most people. If it feels wrong when you do it - then drop back in a couple of steps of a few days each.

[Hughie1951 in reply to PMRpro]

Thanks, puts my mind at rest.

[SnazzyD]

Blimey. The trouble with galloping down once under 6mg is that you are not just risking PMR flare by speeding past your lowest effective dose but also hitting the low adrenal wall. You really need to try to avoid it because some the symptoms can be similar so difficult to diagnose and poor adrenal function can be debilitating. Trying to lead a normal active life, especially if the joy of that is likely to make you overlook early signs of problems can be a hindrance, especially if the feel good factor makes it seem harmless. I often read posts that say, it’s all going well apart from, then a list of niggles and pains. There seems to be a disconnect there. The trick with this is not ignoring the clouds on the horizon and waiting until it’s raining before acting. This may be slowing down, holding up a reduction or even going back up. Unfortunately, good inflammatory markers are not always a reliable green light if you have niggles. This can be due to a lag behind symptoms, the need for worse symptoms to show or who knows what else.A cortisol test isn’t much use over 5mg because your body doesn’t need to try too hard because the Pred has it covered . This is why a Synacthen test is usually done after being under 5mg for a decent spell. If you are about to go back up above 5mg it might be a bit of a waste because who knows what your function will be next time you’re out the other side. Often at 5mg the cortisol test looks a bit lack lustre but a bit further down the dose ladder it’s much better. Anyway, your GP will decide.

[Maryis80 in reply to SnazzyD]

What does a Synacthen test do please? Have been on 5mg for six months,. Due to see rheumatologist next month should I request this test?

[Hughie1951 in reply to Maryis80]

It’s a test to assess how your adrenal glands are actually working. It measures the response to the administration of a drug that stimulates the adrenal to produce cortisol. It gives more information about the state of your adrenal glands than a simple blood cortisol test does.

I’m no expert on PMR or long term steroid therapy! I’ll leave it to others to suggest whether you should have one or not.

[SnazzyD in reply to Maryis80]

There is a link in the FAQ to a piece about Synacthen test but the link keeps sending me back to my login. See if it works for you. The production of cortisol involves a series of steps involving the brain which picks up the low cortisol and sets in motion a chain of hormone messages that ends up with the adrenal gland being told to produce cortisol. Being on Pred (a cortisone, an artificial cortisol) especially over 10mg tells the brain to not bother because there is already so much in the system. This process can be switched off for so long that it has trouble getting back up into smooth working order once the Pred dose drops to low enough that our own body needs make up the difference. The Synacthen test tells you if the adrenal gland is capable of making cortisol by mimicking the hormone coming from the brain to tell it to fire up. It doesn’t tell you if any other part of the process is working but it’s a start. You might get a good result but still get bouts of horrible fatigue because although the adrenal glands can work they might not for whatever reason on a particular day or if you need them to work really hard all of a sudden like after having a shock. My endocrinologist wouldn’t do a test until properly below 5mg and said my 4mg was the highest he’d go. This is because even 5mg for some can be enough to keep the adrenal glands a bit sluggish. It is an expensive test done in hospital so they don’t want to do it for no reason. I was lucky and got mine booked by the GP way before I was even at 5mg because she knew the wait would be long. The Rheumatologist hadn’t even thought about it. Some docs don’t do it as routine and many will only do so if the patient is complaining of symptoms of poor adrenal function. My result at 4mg wasn’t special but the repeat at 1.5mg was good. Even then if I had a big demand on my body like a day’s travel I’d go into collapse or if I’d had a stressful few days. Even now 10 months after stopping Pred I have a limit to what my body will cope with.

[Hughie1951]

Thanks, most helpful. The trouble is nobody sits down and discusses case management with you.

My interactions went like this.

I think you’ve got bilateral rotator cuff, we’ll need to inject them.

Not PMR then. (my diagnosis)

No, but we’ll do a blood to be sure.

Ah, it’s PMR. You’ll need steroids. Taper every 4 to 8 weeks. You may need a low dose for life.

End.

Then I found this place!

[Longtimer in reply to Hughie1951]

Shocking, but sadly not surprising.....

[PMRpro Ambassador in reply to Hughie1951]

There IS a positive: this GP is not going to force you off pred in a hurry! And the rest - we are pretty good guides ... We WILL always tell you when you need to get a doc involved.

[GrandmaPirate]

You are describing my Pred tapering off and subsequent increase by my Rheumy to 6 mg after PMR flared up after Astra Zeneca injection. On 5 July I will have my second shot and until 3 days after that I must continue on 6 mg and thereafter on 3 mg/day. I will report in July on the outcome.

[Grammy80]

This group is a saving grace~!! As has been said, look at the quality of your life. A low dose of pred to be able to function fully would seem a small price to pay. A GCAer who is 86 and climbing has taken 1 mg per day for 20 years. She has tried getting off...NO GO. So, she lives fully. She is able to enjoy her 10 great-grandchildren. 💖