3rd attempt at tapering down from 5mg prednisolone.

[camshall]

Diagnosed May 2022, started with 30mg tapering down until I was on 7mg when symptoms began to appear again. I continued down to 2mg hoping the body would adjust but could not move much so doctors increase dose and i start tapering down again, back to 4 and symptoms return, back to 6 and awaiting a call from the doctor next week.

[SnazzyD]

Hello and welcome. From the brief information about your journey it sounds like you have reduced more quickly than your autoimmune activity is ready for. You are only 18 months in so your first attempt was probably way too optimistic. What symptoms are you getting back? Is your plan that of your doctor or have you been left to it? Others will reply so sit tight.

[camshall in reply to SnazzyD]

Never seen a doctor since I was diagnosed, had a few blood tests though. Was struggling a bit last Monday, increased by 2mg but still not getting out of the chair and walking straight away, need a few moments to get going.

[SnazzyD in reply to camshall]

Goodness! What did they advise in terms of Pred management?

Regards low doses, are you aware of steroid induced adrenal insufficiency. If not, and that’s common, do head to the FAQ’s and look under A for adrenals; essential reading for those reducing under 10mg.

.

[DorsetLady PMRGCAuk volunteer]

Hi,

Couple of observations -

Pred does not cure your PMR, it just controls the inflammation caused by the underlying disease- and as long as your PMR is active [which can be anything from 2 years to 6… irrespective of what your doctors may tell you] that inflammation is produced every day.

Your initial dose is higher than required on day to day basis to get your built up inflammation under control - then aren’t reducing come what may to zero - you are tapering to try and find the lowest dose that gives you the same relief as the initial dose did. On higher doses when you have plenty of Pred sloshing around your system that is relatively easy, once you get to lower doses, it becomes more difficult as you have no or little wriggle room with the drugs.

If symptoms reappear you do not reduce… hoping the body will adjust - it won’t - if you are on too low a dose of Pred to control them, you are too low… going lower will just make things worse.

Maybe have read of this general info- even though you aren’t new, new -

healthunlocked.com/pmrgcauk...

- and also think about using a slower taper regime in future - couple here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[camshall in reply to DorsetLady]

Thank you, will have a good read

[waltztherapy in reply to camshall]

Can I add my little bit of experience here in the hope that it helps. I was diagnosed around the same time as you. Started on 15mg prednisolone and after 18 months and a couple of set backs I am now on 6.5mg prednisolone, reducing by 0.5 mg every 6 weeks. Previously from around 12 mg the reduction was 0.5 mg every 4 weeks. I believe it may be reduced even more slowly when I get to 4 mg. Rheumatologist every 6-8 months quite helpful.

Advice from our volunteer, knowledgeable and experienced advisors, on this forum, is of immense value, hope you can benefit from it too. Best wishes.

[PMRpro Ambassador]

Hi and welcome!

You are NEVER reducing relentlessly to zero - you are tapering the dose in a process called titration to find the lowest effective dose for YOU at this point in time. When the symptoms start to reappear that is a sign the dose is now too low for NOW and you go back to the last dose you were good at. Wait a couple of months and try slowly and carefully again, it might work. If it doesn't - repeat the process, go back and wait a bit and try again.

The lower you get, the slower you need to go, down to 1/2mg drops is good from about here and a good 4-6 weeks at least between drops, maybe 8 weeks. It may sound slow but it isn't slow when it works. If you try to rush you run the risk of a flare of the symptoms that gets bad enough to need to go to a much higher dose to control them and if you do that repeatedly it can become increasingly difficult to get back to pain-free. You should never be worse at the end of a taper step than you were at the start of it and your aim is to feel as good as you did at the starting dose - that is your guide,

You WILL get lower - just not yet. But beware of your doctor trying to force you to stay at a lower dose - you need ENOUGH pred or the inflammation will just build up again. And that will take you back where you started.

[camshall in reply to PMRpro]

Thank you for the information, I will be able to have a more informed conversation with my doctor next week. By that time I will be one week on the higher dose, it is gradually getting easier to function, but I may need to go higher as the symptoms are still there slightly. Do I increase by another 1mg or jump to 10mg and reduce if the symptoms disappear.

[PMRpro Ambassador in reply to camshall]

That sounds promising at least. What we suggest for a flare due to overshooting the dose you need is to add 5mg to the dose where you flared for up to about a week and then drop straight back to the previous good dose. If the symptoms are improving, maybe add 5mg for a couple of days and see if that is enough and then back to the lower dose.

[camshall in reply to PMRpro]

I will see what the doctor says but feel i need to do as you suggest. Talking with her on Tuesday

[PMRpro Ambassador in reply to camshall]

Doesn't sound as if your doctor is particularly interested!! Wonder how much they actually KNOW about PMR!

[camshall in reply to PMRpro]

Been left to my own devices really

[PMRpro Ambassador in reply to camshall]

Which usually means they don't really know much about it ...

[camshall in reply to PMRpro]

Wondering how long an increase in pred takes to relieve the symptoms. I have just increased another 1mg, now up to 7. Been on 6mg for 5 days and still a bit stiff.

[DorsetLady PMRGCAuk volunteer in reply to camshall]

It really depends on how much you have increased your dose by, and how much inflammation has been allowed to build up whilst on too low a dose. … that’s why the advice it’s usually to go for an extra 5mg…from the get go. ..and stay there for 7-10 days. However you can stay for 14 days without impacting on the drop back down to previous dose.

Bit of a ‘how long is a piece of string’ question… no perfect answer.. 🤔

[PMRpro Ambassador in reply to camshall]

As DL says - it all depends. And creeping up rarely works well - which is why we say add 5mg from the start, quicker results and you are back to the right level faster.

[Gimme in reply to PMRpro]

I've been wondering that myself, ever since my diagnosis. 🙄

[DorsetLady PMRGCAuk volunteer in reply to camshall]

As per PMRpro’s -comments and your query - this contains usual advice for dealing with a flare-

healthunlocked.com/pmrgcauk...

More reading… sorry 😊

[SnazzyD in reply to camshall]

At what dose were you comfortable?

Doctors seem to vary in their approach to PMR. Some are of the belief that PMR is over with in 2 years (it can be for the few) which is contradicted by research and doctors who are more recently informed. Others are so afraid of steroids that getting the patient off them trumps control of autoimmune induced inflammation, come hell or high water. Others who are realistic will not hurry the patient through an arbitrary plan, but tailor the plan to the patient’s individual autoimmune condition trajectory. There are also those who leave well alone and hope it all works out in the end. Ideally you have a doctor who embraces the fact that you try to be informed and advocate for yourself and not feel threatened. PMR is one of those conditions that separates the wheat from the chaff!

[camshall in reply to SnazzyD]

Should have kept a diary. But towards the end of 2022,I started to seize up but just kept tapering as per the instructions. All this year has been a bit of a struggle, never really free from the pmr. Will be asking doctor to move to 10 mg and see what she says.

[MamaBeagle in reply to camshall]

If you read all the info you've been given on here you'll probably be a lot more informed than your doc is! I suggest that then you take control of the conversation and don't ask anything just tell her your plan.

And then get all the advice you need for managing your PMR from the experts on here.👍

[Gimme in reply to SnazzyD]

Spot on and very succinctly put. That's exactly my experience too.

[camshall]

Sounds like a good plan

[Pixix]

just to say you’re not alone! I’m on my third reduction from 5mg, too! It’s taken much longer than I hoped, but I’m on 2mg now, & sticking to it for a while (4 months). I’m having a rocky time with other health issues & my doctor says he’s happy with me taking 2mg a day as My PMR is stable right now, & that’s good! Just FYI!

[paintpots]

I have to say that taking control is the best thing. My doctor is very good but I was told that it was going to be 12 months on Pred. 4 years later I am down to 1mg by using the dead slow nearly stop taper plan. Your body will soon tell you that you are under the dose to control the symptoms, listen to it and adjust your pred. Having multiple flares does you no good, easy does it, is the way, don't rush to get off pred. You will come off pred when your body allows it, not when you or your doctor want to stop.Of course no one wants to be on Pred for years but for many that is the case. When the polymyalgia has burnt itself out, you will be off it.

[camshall]

So I spoke with the doctor today, with regards to the pred she said if 10 mg does not control the symptoms then I will need to see a rheumatologist. Go appointment for chest xray and blood test next week. Getting the pmr under control was her mantra, so I have increased to 8mg, and tomorrow if no better I will go to 10mg. And keep increasing till I get relief.

[DorsetLady PMRGCAuk volunteer in reply to camshall]

Hopefully 8mg will do it, but you might need 10mg (fingers crossed no more) - and see how you are.

If your part of country is like most, don’t hold your breath for a Rheumy appointment.