Prednisone dosage and time frame to take # mths?

[Nurseacw]

How long on steroids????

[Koalajane]

I started on 15mg over 4 years ago and now on 4.25mg. Tapering slowly and when I feel ready

[Purpleazalia]

Hi nurseacw, I was started on 40mg/day and given a 12 month tapering plan with flexibility to adjust if required. I've been on steroids for 12 months.

[SnazzyD]

It depends very much on your circumstances and diagnosis, starting dose and symptom control throughout. Also, your level of adrenal function under 5mg makes a huge difference. Normally it is more than 2 years but more like 5-6 years and some go for longer. What’s your situation?

[DorsetLady PMRGCAuk volunteer]

That’s a very open-ended question..,and everybody will probably give you a different answer.....depends what you have, and how easily it is managed...

me - GCA (start dose 80mg) - and four & half years, in remission almost 5 years.

[PMRpro Ambassador]

How long is a piece of string? Despite some doctor's touching belief that PMR is done and dusted in under two years, the real figures are more like 1 in 5 need pred for a year, by 2 years 1 in 3 patients are off pred. Half of patients need pred for more than 6 years, albeit mostly at a low dose. There is no way of knowing in advance - it is a case of tapering very slowly, identifying the lowest dose that works for you and then trying small drops at intervals ongoing.

[pata63]

Everybody is different but my Prednisone regime went smoothly. Diagnosed with just PMR and not GCA, and started in April 2019. Dosages:

20 mg 1 month

15 mg 3 weeks

12.5 mg 3 weeks

10 mg 6 weeks

7.5 mg 3 weeks

6 mg 3 weeks

5 mg 22 months with occasional "sick day" doubled doses when I was in hospital a few times with acute bacterial prostatitis and a kidney stone and an inguinal hernia op and a week of gastroenteritis. That was my first half of 2020.

I am still working on getting below 5 mg to 4.5 mg starting this year using a slow taper, but my first effort didn't succeed. Sick as a dog and in bed for 10 days starting with extreme exhaustion and progressing to daily migraine headaches and extreme light sensitivity. I'm back on 5 mg and am having appointments next week to discuss whether to try 4.5 mg again any time soon. On Friday afternoon I had a flu shot and that set off a flare. My pelvis and upper legs were like the bad old days again. Doubled my Prednisone dose to 10 mg for two days and now I can move easily again today.

So yes, best plan to be in for the long haul. But my wife was delighted when I could move again after 9 months of having PMR but undiagnosed and untreated. I am so much nicer to have around when I'm not in pain.

[Avadip12]

I started on 15 mgs 15 yrs ago , and have been up and down ever since. I think mainly, as I read others experience. The up and down has been due to consultant continually trying to get me off steroids and when I get lower I have another flare up. So now I am staying a 5 mgs , apparently a safe dose ? As I cope better there

[PMRpro Ambassador in reply to Avadip12]

What happens below 5mg? It MIGHT be poor adrenal function if the consultant has tried to reduce you too quickly and not given it enough time. And after 15 years that is likely to be a big problem.

And has your adrenal function been checked out? It is likely to be poor in terms of adrenal reserves - not a day to day problem but you are at risk of an adrenal crisis in an emergency such as an accident, severe emotional trauma of any sort or illness.

[Avadip12 in reply to PMRpro]

I never realised that , I thought that only happened on higher doses when you stopped or reduced very quickly .

[PMRpro Ambassador in reply to Avadip12]

No, as long as you are taking pred at 5mg and above adrenal function will not restart well - it requires a low level of corticosteroid in the body to encourage the whole set-up to wake up and start functioning normally. Even after tapering to zero and stopping altogether it can take up to a year for reliable adrenal function to be established and you should be carrying a steroid card just in case.

[Avadip12 in reply to PMRpro]

Please can you site where this information is, as I have been reading articles on adrenal fatigue, and it is not recognised as a medical condition. Of course Addison’s disease , or adrenal crisis which can kill , this is when you have been on high steroids for what every reason and stop suddenly and your own adrenal glands aren’t ready to take over again , and you go into crisis. That is why we are told to reduce slowly. Just trying to understand

[PMRpro Ambassador in reply to Avadip12]

Adrenal fatigue ISN'T recognised as a medical condition. That suggests that the adrenals get tired because of being in service! It is mainly an excuse for people to set up marketing for useless supplements (in this context at least) on top of selling advice - some of which is very good advice in general but won't make the adrenal glands work any better.

However, adrenal insufficiency IS a real condition that is due to damage to what is called the HPA axis, the hypothalamus, pituitary and adrenal glands and a load of other hormones that all work together to keep the body running properly by producing cortisol amongst other things. The damage may be due to a range of things - illness, trauma and even medication.

hormone.org/diseases-and-co....

When the adrenal glands aren't producing enough cortisol it causes Addison's disease which, if left untreated can make you very ill, even die. When they produce too much cortisol it is called Cushing's disease and it too must be treated by finding where the extra cortisol is coming from - it can be due to a tumour. Sometimes they say we are Cushingoid when on pred - but that isn't dangerous in the same way, we know where the excess corticosteroid is coming from. The body doesn't care if it is natural steroid or in a pill - it still does the same.

As you know, when you have been on pred above about 7mg/day the adrenal gland set-up gets rusty - it knows there is plenty of steroid for the body to function and makes no more although the other things the adrenal glands produce aren't affected. Over time it just gets out of the habit and the system needs time and prodding to get back into the swing of things again. That happens when there is a low level of corticosteroid in the body and the "thermostat" registers that fact and tells the whole set-up to get going again. The adrenals don't "kick in" though, it is a slow and gradual process and it swings about rather unreliably for a time. During that time, when they aren't working properly, there are no reserves of cortisol for the event of an emergency (illness, injury, even emotional trauma) so that or stopping pred suddenly can cause and adrenal crisis.

Does that help? Say if there is anything else ...

[S4ndy]

Five years on Prednisolone. Now taking 5mg long term at the request of my Rheumatologist to keep flares at bay. She's to work for me. No flare in six months

[Avadip12 in reply to S4ndy]

That’s where I have decided to be at . 5 mgs suites me .

[Marcy47]

Started on 20mg Sept 2015, Now down to 6mg after a few ups and downs due to flares. so 5yrs 8months and counting.

[IslandRN]

Started on 15 mg Sept 2019 and currently on 2.5 mg. Tapering very slowly since 5 mg as hoping to not flare.

[HeronNS]

My "piece of string" looked like it would be the classic two years long as my taper was uneventful until then. Unfortunately PMR had other ideas and I am now approaching my sixth year on prednisone, albeit most of that time at a very low dose.

[audrey105]

I have been on prednisone for about 5 yearsI started on 20 mg and I am down to 4. I was at 2 until recently and had to increase to 4 because of pain. I still have the pain but it’s not quite the same as before and only on one side

A problem I have now due to the years on Prednisone is thin skin that bruises easily and takes forever to heal. I am I need of a knee replacement and due to the thin skin the surgeon refuses to do it.

I just started taking collagen with peptides

Hoping it will help. I’d like to know if anyone can help me with the thin skin problem caused from the long term use of prednisone

Thank you

Audrey Schnur

[PMRpro Ambassador in reply to audrey105]

You really need to post this as a new thread to get more advice as not many people will see it here in the middle of an existing thread.

[HeronNS in reply to audrey105]

Can't help with skin issue - moisturize is all I know. But have you done anything to help your knee carry on working for you? I ask because I had a knee injury last year and seemed to be well on my way to a knee replacement (the orthopod gave me his card and told me I can contact him when I'm ready, bypassing need for another referral). But I seem to be getting quite a lot more use out of the old limb after all, despite serious OA quite apart from the injury.

[Kaaswinkel72]

Kia Ora PMR Friends, and thanking you all for writing.

In May 2017 PMR started initially with severe hip pain and then the shoulders and neck so familiar to most of us.

I was still working as a physio but because of the extreme tiredness I stopped. Started on 15 mg. tapered quickly, when at two years I was down to about 1 mg.

PMR decided to reoccur badly as she does and now 4 years later on 3.5 mg daily. Each time I try to diminish through one of the schedules

we are offered another body part kicks in, last time the knees got painful and swollen keeping me awake at night.

I am back now taking my prednisone am with breakfast, after I took it early hours am when there were still more symptoms. The tiredness is mostly better, but having a 40 min nap early pm is still best to tick me through the rest of the day. My attitude now has changed. Having taken the prednisone on 3.5 for one whole year and living ok with that quality wise I know that my body will indicate when I am ready to diminish the prednisone again. I am just about there I think....

Yes I know got osteoporosis and the prednisone does nt help that AND being able to function at this level is my main priority.

Advise?? For me is accept the “ disease” don t fight it, let it unfold and keep yr eyes open for a possibility to change the meds when you are really ready for it, not because somebody else tells you you should. So.. I have managed this mainly by myself, my gp is not interested to do her reading up about it and still thinks that two year is the term it takes to go away.....and she supplies me with the prescription on my demand.

Yes, and I take 0.5 tablet or amytriptilyn which helps me sleep. And of course read read... empower yourself, ask this forum for advise. You are never “ the only one”...

[Cyclone69 in reply to Kaaswinkel72]

My rheumatologist has put me on hydroxychloroquine and is having me reduce my prednisone slowly, has anyone else done this?

[PMRpro Ambassador in reply to Cyclone69]

There is only anecdotal evidence that HCQ works to reduce need for pred in PMR - the study so often quoted is rather dodgy. It may work for some by changing the way the body metabolises pred.

[Kaaswinkel72]

No, and there is no way I would say yes to that, unless there is clear evidence that is beneficial for me and not some trial medicine pushed by the drug companies. Am I too cynical??? I don t think so.

[rosemw]

I started on 15mg almost 2 years ago. After diagnosis PMR or GCA, tapping pred. is a big deal. Not just my rheumatologist put pressure on me to low down Pred. I also set goal to low down pred. But I had very bad flora this Feb. increase from 7 mg to 10 mg, still not enough. I have to increase to 15 mg. I feel much better. I learned a big lesson that is listen to your body, check your CRP and ESR is normal or not, then decide to low down pred. Go slow.