Prednisolone

Well having been on 20mg Prednisolone for one month I’m coping pretty well in terms of it keeping the pain away. My question is could I stay on 20mg or close to that fit the longer term or are there dangerous side affects of staying on this dosage? What’s the longest people have been on say 15 to 20mg??

[DorsetLady PMRGCAuk volunteer]

I see from previous posts and profile you've had a bit of a chequered journey.

What do mean - you are coping pretty well? Do you still have issues pain-wise or do you mean side effects of drug? At 20mg I would expect to be doing well.

Can you give a bit more info on what's gone on in last couple of months.

As the 20mg is presumably to recover from a flare, 4 weeks certainly should have sorted things - and then the "recognised" taper is usually 20-17.5-15mg - not achievable for everybody. if not, then 1mg per month - all on the proviso that no pain returns.

Many of us have been on much higher doses than 20mg - me - 80mg for 2 weeks, 60mg for 8 weeks - side effect unpleasant, but not dangerous.

[Hidden in reply to DorsetLady]

Indeed.. pretty up and down past... yes pain free at 20mg.. plan is 1mg decrease a month... before I started at 15mg and 2.5mg decrease.. but the pain care back at 10mg... thoughts of rheum was didn’t start high enough and steps to quick. I just wondered whether a dosage of say 20-15 was sustainable for a long period of time with no side affects etc if I had to stay on this type of level to prevent pain returning

[SnazzyD in reply to Hidden]

Depends on what you mean by long term. I wouldn’t stay at 15-20mg as in permanent maintenance without good reason because of side effects mounting up, not least your skin and blood vessels. Yes, many of us are starting on much higher doses and in effect have been sustained about 15mg for a year, but there is a cost and for any individual it is impossible to say how much. Your doc sounds right. 15mg was a lowish start dose and then the 2.5mg drop (16%) and assuming another to get to 10mg (20%) made it such that you couldn’t pin point your ideal dose with any accuracy. I was dropping in 1mg steps are this point, couldn’t cope with 2.5mg not because of PMR but because of withdrawal.

[Dydee in reply to SnazzyD]

I think this is where I get confused. What is the difference between the return of PMR symptoms and withdrawal? I have a planned taper of 1mg every 2 weeks from 15 to 10mg. I am currently at 13mg. Not sure what to watch for and was just expecting PMR symptoms to return if I tapered too much. Is there something else I should be aware of? I have noticed a bit more tired but pain level seems to be OK. I know everyone is different, darn it, so trial and error seems to be the only way through this.

[SnazzyD in reply to Dydee]

A basic rule of thumb is that withdrawal tends to kick in within a day or two (mine was usually day 4 at this level) and a flare a week or more. However, the tiresome adage, that everyone is different does stand and you have to get used to your signals. I just had GCA and found withdrawal could be quite painful in a general fluey ache kind of way, but no stiffness or specific muscle pain or loss of function. However, I would get specific muscle pain if I overdid muscle activity eg gardening, and this tended to kick in 2 days after. I never used Pred top ups to get a job done, tempting though it is when faced with an 3/4 acre of fallen leaves to rake. My muscles became much less robust and easily injured over time and only really started to improve until 1-2mg. So there, that’s clear as mud isn’t it?

[PMRpro Ambassador in reply to Dydee]

If you change the dose of pred by too much at one go (and it doesn't need to be much for some people) your body may react to the change of dose even though the new dose is still plenty to manage the inflammation caused by the PMR. Unfortunately, this withdrawal response often looks very similar to the disorder for which you are taking the pred - so very often both patient and doctor are fooled and think it is a return of symptoms because the dose is too low. Personally I think changing the dose every 2 weeks is pushing it - you haven't had time to be sure the new dose is still enough to manage the inflammation.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Like the others say, wouldn’t want to be on it long term, and you shouldn’t need to be with PMR. But, as obviously hasn't happened previously you need to get the initial inflammation well under control before you try and deal with the daily production. If that doesn’t happen, then you are continually trying to fight on 2 fronts! One is bad enough.

[PMRpro Ambassador]

It isn't advisable - the higher the dose and the longer you are on it, the more likely you are to develop long term adverse effects. I have no identifiable adverse effects after a considerable time overall at 15mg - but I need it for other problems as well as PMR.

However - your story suggests your doctors don't really understand PMR. 15mg was OK, 12.5mg was OK - 10mg wasn't at the time. But 11mg might well have been, The difference between enough and not enough is that small. You are NOT taking a course of pred and then reducing to zero pred - you start at a dose that is more than you are likely to need and will induce remission of the symptoms. Then you undertake what is called a titration to find the ideal dose for you personally. It is a technique used with many drugs but usually the other way round: you start at a low dose and titrate UP, to find the lowest dose that works for you. That doesn't work in PMR, you are always playing catchup. In GCA the patient could go blind while waiting to find the dose they need.

The underlying autoimmune cause of PMR is mostly at its most active in the first couple of years and so you usually need a higher dose at the start than you will later on. If you reduce too quickly you almost always run into trouble because you overshoot the dose you need just now. Small steps and staying at each new dose long enough to know it is still enough almost always reduces the likelihood of such flares providing you keep an eye out and are honest about returning symptoms.

Not everyone absorbs the same amount of their oral dose of pred - it can be anything from 50 to 90% so you can't really compare 2 people. One may absorb 90% of their 10mg dose and be on the equivalent of 9mg, their neighbour may need more than 15mg oral dose to absorb the same amount. There are other factors - is the underlying disease very active, does the patient need to work, what do they weigh? There is no single "right dose".

Had you gone 1mg at a time you might have done much better first time round - not least because it would probably have taken a few months longer to get to 10mg by which time it was enough or you would have found 11mg was OK.

rcpe.ac.uk/sites/default/fi...

uses a taper that starts with 6 weeks at 15, then 6 weeks at 12.5 and then drops to 10mg where they stay for a year. The authors found it reduced the flare rate from 3 in 5 to 1 in 5 - and I think that is mainly because they waited so long at 10mg and the disease activity had faded.

[Predderman2020 in reply to PMRpro]

Interesting point about absorption - I have been taking Omeprazole in the am, and maybe 2 hrs later the Pred. This is to reduce the back pain (referred pain from stomach, perhaps). Do you think I might be under-absorbing as a result? Thanks!

[PMRpro Ambassador in reply to Predderman2020]

I honestly don't know. Others who take a PPI and pred may know.

[Welshmavic]

I been taking this wicked evil drug for over ten years, started on a low dose then up to 40mg aday for over four years. The weight gain and the moon face I developed was causing me to suffer with depression. Thankfully now that I take ten mg a day, I know its a must and I have to take it for my RA but if I was told at the time what the side effects of this drug would be I would never have taken them.

I would advise others to seriously think about the side effects later down the line. They treat you and change you, I have changed myself since I been on them, my attitude and aggression where as before. If i could start this over I would say no!

[PMRpro Ambassador in reply to Welshmavic]

It is NOT a wicked evil drug. It is life-saving in many cases and less dangerous than many others.

However, if you were left on high dose pred for an RA diagnosis, in your place I would be asking your doctors why. Pred is the mainstay of management of PMR and GCA, until recently there was no other option, but there has been a wide range of DMARDs and biologics for use in RA for many years. Methotrexate has been the first line approach across the world for over 30 years so it is not an unknown or new development.

Weight gain is also not inevitable when on pred - many on the forum will vouch for that. It does require some discipline. But for many here it has prevented total irreversible loss of vision - and a bit of extra weight is peannuts compared with that,