Self-adjusting steroid dose with PMR

Hi ronny!

You should really have been started on 15mg - you would have been improved faster with that. If you start at too low a dose it takes longer to achieve a result. And I don't see why he was concerned about "monitoring" - if the symptoms are improved, that is a good monitor! If they come back - your dose isn't high enough. Quite basic really!

Google and read this paper and show it to your GP (just copy and paste the title, it is free to download and print):

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis

by V Quick and JR Kirwan, J R Coll Physicians Edinburgh 2012

It provides the reduction pattern that they use in Bristol and which achieves a far lower relapse rate than other reduction schemes. You will see they use 15 for 6 weeks, 12.5 for 6 weeks and then 10mg for a year before attempting a further reduction. That would cover your trip comfortably.

You may never be totally pain free - some people are, some aren't. And it also has a lot to do with your expectations. If you expect to be back totally to normal and do everything you did before at the same intensity, you probably won't be. You also have to make some accommodation to PMR - if you overdo it you will suffer for it. More reading: the Spoon Theory by Christine Miserandino. If you rest you will feel better - never mind how well you feel on pred (it can make you very fired up) - if you do too much your muscles will take far longer to recover than if you hadn't got PMR. You need gentle exercise to keep the muscles flexible and avoid the stiffness - don't overdo it.

If you still have pain it is usually better NOT to decrease the dose but wait a bit. As you reduce you may find pain appears immediately after reducing but it improves over the next couple of weeks - that is almost certainly due to the lower dose of pred, "pred withdrawal" pain. If the pain reappears after a short time and then increases over the next couple of weeks it is far more likely that the dose is too low for the disease activity at present, go back to where you were comfortable. Many of us find reducing 2.5mg at a time is too much, some struggle with 1mg steps. I and a couple of others can't go down even 1mg in one go, it takes us several weeks, starting with the new dose on one day, old dose for 7 days, new dose for one day, old dose for 6 days and so on down to old/new on alternate days. And I have pauses where I do new dose/3 days old dose at least a couple of times! Same with 2 day gaps.

What I strongly advise you NOT to do is follow that rate of reduction you quoted - it will almost certainly result in a relapse. Many patients are able to reduce to 10mg quite well once the initial inflammation is under control (and that means long enough on 15mg to start with) but 10mg often poses a sticking point, as do 7.5 and 5mg for some reason. If you let the inflammation return and get out of hand the next time round may be more difficult to get it under control - it is seen over and over again.

Top experts in the rheumatology field have recommended that any reduction should never be more than 10% of the current dose. At 15mg that means 1.5mg, not 2.5mg. By the time you are down to 10mg you shouldn't ever be dropping more than 1mg at a time.

My GP here in Italy was formerly a rheumatologist and encourages me to wait a couple of months after a rduction of 1mg before trying the next. Doing that I have got from 15 to 7 in a year - she is not worried about length of time on pred, she knows reducing too fast means a relapse and higher doses of pred. The aim is to keep the total dose of pred as low as possible - rushing at it too often means going back to a higher dose and it takes longer in the end. I've had PMR for 9 years, undiagnosed at first and for the last 4 I have been on pred. I have gone down to 7.5mg before - and relapsed. This time is looking better than ever before - I hope. But nothing will induce me to rush, at present I have a decent quality of life and I'm not risking throwing it away again.

Have you had a dexascan to get a baseline bone density? Are you on calcium and vit D tablets (you need them)? I have had no problems with bone density from pred - no change at all in 3 years and I don't take alendronic acid (nothing would induce me to unless they could prove to me that my bones were being damaged. They aren't.)

If I were you, I would take 15mg for at least another 3 weeks, then reduce to 12.5mg for 6 weeks and then 10mg and stay there - not make any attempt to get down to 2.5 by the time you come back. That is what you would be told to do in the Bristol rheumatology department. There is no desperate hurry, this isn't a race and you are going to be doing quite a bit. Dealing with the time change will be hard at first - and you aren't telling me you are going to sit on a beach and do nothing for 5 months are you! Judging by the Australians we have come across their doctors aren't too au fait with PMR so you don't want to have to have recourse to them! No idea about NZ.

Hope this helps - ask away if you don't understand anything,

Eileen

Dear Eileen

Thanks so much for the advice. I will read the article, and feel reassured I am sure. My GP was being cautious and wanted to refer me to a rheumatologist but there wasn't time so I am more or less on my own till I return. So this forum is so useful. All good wishes, Ronny

I started on 10 mg and then to 5 and then 2.5 for the past 18 months. I very rarely have pain but when I do I just take an extra night-time pill. When I started, it did take about 1 month before I was pain free.

There is no real need to see a rheumy for PMR if it is a clear clinical picture and can be confirmed using the simple method Quick and Kirwan suggest. You need a rheumy appointment if there is an atypical presentation - young, extra symptoms, not a dramatic response of the symptoms to pred - and that is really why this paper was published I think. Plus your GP should have done a few other tests just in case.

Monitoring the ESR and CRP blood tests may help - but 1 in 6 patients don't have raised readings (I don't but responded classically in 4 or 5 hours to pred). If you have a raised ESR or CRP it might be helpful to keep an eye on them - but not necessarily. Sometimes they will fall with the pred treatment and remain low after a reduction even though there are clinical symptoms. Then it becomes difficult to tell if the pain is from PMR coming back or from removing the pred. So slowly and carefully and learning to listen to your body is the best way to go. If a higher level of pain comes back you almost certainly need to wait a couple of weeks and if it gets worse go back to the previous OK dose if it continues to get worse. Don't be in denial - pain is ALWAYS a sign there is something going on and must be taken seriously until you know why. And with PMR it is more often than not a case of you having tried to go too fast or too far.

You are not looking to get off pred asap - you are reducing to find the lowest dose that combats the symptoms. The pred has done NOTHING about the disease process which is an autoimmune one, the body mistakenly attacks itself. The pred deals with the symptoms you have by reducing the inflammation in the muscles and joints until the autoimmune disorder burns out - it does in some people, it takes longer in others, but many people do manage to get to a stage where they no longer need pred. It may happen in a couple of years, it may take 5 or 6 - I know people from both versions.

What you MUST watch out for whilst you are away are any symptoms of GCA, giant cell arteritis. If you have any new onset headache, pain in your jaw when chewing, soreness of the scalp or temples (by sore I mean tender to the touch, hurts to comb your hair) and, above all, visual symptoms (double vision especially in the morning or after a nap, black spots that don't move (i.e. not floaters), something that feels like a curtain in front of your eye) then you need to go to a doctor immediately. Don't wait for an appointment in a few days time, go to an emergency department if necessary. The dose of pred you are is NOT high enough to prevent GCA (though some doctors think it is, GCS needs over 40mg/day at least) and 1 in 6 patients with PMR go on to develop some degree of GCA. It doesn't always affect the temporal artery but it can cause irreversible loss of sight, it is a medical emergency. In the absence of any of these an optician who is able to examine the retina and optic nerve is a last resort to provide some help.

I take it you go soon? Do have a good time! We are always here for questions - thank goodness for the internet - but it might take a day or so.

Eileen

Hi Mathmom and Eileen,

It's good to have feedback from someone who is also on a low dose of pred, and has found something that works to keep pain free. Experiences vary so much, which is why these websites are so useful, but I don't need to tell you that! I have downloaded the Kirwan article and will read it off-line and make my decision.

We are currently on our travels, visiting Solomon Islands for the month of October before travelling in Australia and New Zealand. There is an Australian woman I know living here who has PMR and is managing it well so I have spoken to her. I will watch out for GCA without becoming a hypochondriac - it sounds dreadful.

So, thanks for being there and for the advice.

Ronny