Steroid advice please.

[birdwatcher]

Good morning all you nice people.

I am now in my 5th week since my PMR diagnosis. I have been on 10 mlg Pred, which my rumeitoligist has advised me to take at the beginning of the day. I have noticed, in the last few days some of the initial stiffness I had in the early days, returning in the first few hours of the day. It soon passes through the day, so it's not to much of a problem at the moment.

It has raised a couple of questions for me though.

Could it be that my body has adjusted to the steroid, so it's affectivness is slightly decreasing?

Or Could it be that my PMR is getting worse?

And one more thing, would it help if I split the dose, and had 5 mlg am, and 5 pm. Or would that be a bad idea?

I would appreciate you advice and comments.

Do, all have a good day.

Regards Ron.

[PMRpro Ambassador]

It may be that, if you were diagnosed quickly, the underlying autoimmune disorder that causes the symptoms we call PMR has increased in activity a bit and possibly needs a bit more pred for the moment - 10mg is a VERY low starting dose with the most recent recommendations:

rheumatology.org/Portals/0/...

suggesting in Recommendation 3 a dose range of 12.5-25 mg/day - and that under 12.5mg should not be used.

Or, and far more likely, because you feel better you are doing more! The pred just manages the pain and stiffness - the rest is up to you. The autoimmune disorder is causing damage to the muscles and they are unable to signal you are overdoing things as they normally would and then are much slower at recovering after exercise - an activity that was fine before is now like heavy labouring and your muscles are signalling, albeit a bit late, that they'd like a bit less effort put into things.

It is early days to be thinking about splitting, it is felt that for most people a single daily dose is the best, for various reasons but including the fact the higher the spike of pred in the blood the better the morning return of symptoms is combated.

A new batch of inflammatory substances is shed every morning about 4.30am - the sooner you take that single dose after that the better the effect tends to be - less inflammation has developed for it to deal with. The optimum time to take your pred to avoid morning stiffness is 2am - the stiffness never gets hold as the peak in the blood is at about 4am - and I do know people who have done that. The antiinflammatory effect lasts 12-36 hours depending on the person - if you are a 12 hour person then maybe the splitting would help but you can only try and see what happens. Usually the suggestion is maybe about 2/3 in the morning, the rest in the evening - difficult if you have 2x5mg tablets. You will need 1mg tablets at some point when you start to reduce - but I really wouldn't advise that yet!

[birdwatcher in reply to PMRpro]

PMRpro,

Thanks for all the information. I did read the recommendations you included. Why do you think they say that less than 12.5 should not be used, is it that they consider less than 12.5 would not be effective at alieviating symptoms? My reumatologist didn't want me on a higher dose specificly because of the gastritis event that put me in hospital, and having to have blood transfusions. And I am very reluctant to increase the dose, if I can possibly avoid it, I am coping at the moment, but who knows what the future has in store.

I also see now that I don't want to be in such a hurry to reduce from the 10mlg at the moment.

I'm not sure about setting the alarm for 2am. Also, I understand your not supposed to take it on an empty stomach, and I wouldn't have taken my lansoprazole to protect my stomach.

So do you think it wouldn't be harmful for me to take 5 in the morning and 5 in the evening. Or given that I'm not in extreme discomfort, just a couple of hours after getting up, of mild stiffness. Or should I stay with what I'm doing at the moment do think?

You are spot on about the exercise, I have noticed that if I run, my performance is 50% of what It was. Also it is taking me longer to recover.

Also the following day, I am a little more fatigued. Again, I will see how I progress, or otherwise.

Thanks,

[PMRpro Ambassador in reply to birdwatcher]

I don't know why - I would suspect though that the use of too low a dose runs the risk of not clearing out the existing inflammation quickly - 10mg in a larger person is likely to be a longer term dose to manage the daily amount of new inflammatory substances. It is also possibly not enough to give the clear cut result that many doctors look for which many regard as a sign that this really is PMR rather than one of the other options that can also cause similar symptoms. PMR is felt by many (but not all) experts to be alone in its dramatic response to pred at a moderate dose.

It used to be a dose of 25-30mg that was used to start with but then the concerns of side effects came to the fore and a generally lower dose became the norm. But in the meantime thought has turned yet again and it is felt that hitting it hard first of all clears things out and then makes the subsequent reduction easier. No studies have been done so it is a bit anecdotal thus far.

The effect of the PPI lasts much longer than you'd think - and many experts have suggested taking it at night for a best effect in the morning. I'm not recommending that, just mentioning the fact, as I also mentioned the 2am approach! Many people take a sandwich and a drink to bed with them and take their pred early and settle down for another couple of hours - by then it has started to work. A yoghurt or a glass of milk is probably also enough for most people - whether it is for someone with gastric problems I'm not sure. However - if you read the recommendations you will see they also suggest the use of intramuscular injections - in No 5 and with a typical approach described. There is one lady in the south of England who is on injections purely because of the parlous state of her stomach - first for PMR and now, latterly, for GCA. They have worked well.

If it were me I'd stick with what you are doing for the moment - you have plenty of time to experiment later! It would be a shame to rock the boat when you are doing pretty well on a dose that most people take months to get to.

"When I run..." - even on pred, many of us struggle to walk, never mind run! Try doing your runs in shorter bites - you will find that a rest between bursts will probably allow you to do as much with less pay-back. Some really good physios recommend allowing at least a day without activity between sessions to allow better recovery - it was certainly essential when I was still skiing, it took me much of the season to get to daily skiing being possible.

[birdwatcher in reply to PMRpro]

PMRpro,

Your a diamond! Thanks so much for you really valuable advice.

Ron.

[Magster54 in reply to PMRpro]

Thanks for all that information. I'm newly diagnosed and on Pred, this will really help me

[Celtic PMRGCAuk volunteer]

Ron, you have already had good advice from PMRpro, and I agree with not splitting the dose at this stage, especially as you are on what is considered to be a low starting dose.

In a previous post, you mentioned how active you were pre-PMR and I, too, wonder whether you may have taken up too much too soon just because you felt so improved? The steroids aren't curing anything, they are just damping down the inflammation that causes the symptoms, and our muscles will rebel if we ignore this fact.

As you are someone who had a raised ESR marker at diagnosis, in view of your returning stiffness, perhaps a repeat of the blood test at this stage would give you some reassurance as to whether anything is going on. Another recommended blood test is the CRP, considered by some medics to be a more reliable marker of inflammation.

[birdwatcher in reply to Celtic]

Hi Celtic, thank you very much for your reply.

I'm sure you're correct about the exercise, I am slowly coming to the realisation that things aren't what they were before. It has taken, and will continue to take some coming to terms with. The psychology and the physiology requires a huge adjustment to get to grips with, as our friend Mark who posts on here has pointed out on here so helpfully several times. My recent blood test showed that the ESR had recovered somewhat to 12, is that good? Unfortunately they didn't mention CRP.

[PMRpro Ambassador in reply to birdwatcher]

An ESR of 12 is slap in the middle of the normal range found across a large population - whether it is good for you is another matter since it runs from 1 to 20. If you are really a "2" person you still have a bit to go. What was it originally?

Some experts feel that if you are a person for whom the markers work, you should stay on the starting dose until they are stable at their lowest level. Then you could consider trying a reduction. We believe then that from 10mg/day, a 1mg reduction is more than enough and 0.5mg is far better. Spreading it over a few weeks as described here:

healthunlocked.com/pmrgcauk...

is even better. Top US experts recommended some years ago that a reduction should never be more than 10% of the current dose and some people don't cope with even that. It's all explained there.

But this isn't a race - PMR came when it wanted and will burn out (maybe) when it wants. Until then you will need some pred. Rushing the reduction merely increases the risk of flares and even a relapse. It isn't uncommon for people to get off pred and then have another episode - sometimes weeks or months later or even years down the road.

[birdwatcher in reply to PMRpro]

Thanks fo that. I'll have a look back to my bloods pre PMR and let you know what the ESR was.

Ron.

[Celtic PMRGCAuk volunteer in reply to birdwatcher]

Ah, but, Ron, how "recent" was the blood test, ie is it since you noticed returning stiffness? Perhaps next time ask them to check your CRP as well.

[birdwatcher in reply to Celtic]

No it's not, the new stiffness is since that blood test. And yes I will mention the CRP next time I have blood test.

Celtic you are very sharp.

Thanks Ron.

[PMRpro Ambassador in reply to birdwatcher]

Possibly a sign to keep a diary - nothing exotic, just dose, blood tests and symptoms/comments. Then you can check such things easily.

[birdwatcher in reply to PMRpro]

Yes, I am doing that, but thanks anyway.

[CloudGazer6]

Hello. The other reason prednisolone is recommended to be taken as a single dose in the morning usually is to avoid disrupting the circadian rhythm as little as possible. The medication has an impact on sleep anyway so by taking it in the morning for some people this disruption is minimised.

You sound as if you're doing very well with the new regime so far, although I know it can't feel easy. Maybe try sticking with how things are for the moment and giving it a bit more time?

[PMRpro Ambassador in reply to CloudGazer6]

Depends on the dose though - if the dose is above 15mg for long enough it will suppress the adrenal function whatever time you take it. Lots of people find it makes no difference. Not contradicting - just adding.

[birdwatcher in reply to CloudGazer6]

Thanks cloudgazer6,

T/G, I do sleep reasonably well at the moment, so your advice is much appreciated.

Ron.

[Charlie789]

Hello

Glad to read the steroids doing their job.

I can only tell you how they affect me and the timing of the dose recommended by the GP and Rheumy.

The high doses (60/40mg) made me feel like a hamster on a wheel, my brain was running so fast but the body had no energy to keep up with it. So taking the complete amount first thing in the morning gives the body time to deal with it during the day and hopefully will not keep you awake at night. I am down to 40mg now but not sleeping well, it is difficult to switch off. On 10/15mg I feel pretty normal and sleep ok. One feels hungry and I have lost some of my sense of taste. Hope this is a little help, it's all so confusing when we start on the steroids. Can't be of help with the stiffness returning, but the Rheumy will advise.

Take care of yourself and I hope you are soon free of pain

[birdwatcher]

Hi Charlie789,

Thanks very much for your interest and concern, I mean that, but I thought I would draw your attention to the fact that I think the message you are responding to is almost 2 years old, so things have moved on considerably.

I never, over the course of the 2 years increased the dose of Pred from the 10 mg that was prescribed for me by the rheumi I was seeing. After the first 4 months with this condition I was doing fine and was showing signs of real improvement, so I started on the super slow taper reduction plan that the experts on here advise. Just before Christmas last year, still with no adverse symptoms of any kind, I was down to 2mg and about to reduce even further to 1mg and then off completely.

Then I made a mistake! I inadvertently ran out of Pred, thinking I had more stored in a cupboard upstairs. I decided not to bother with getting another prescription. After a week or two I started experience the same stiffness symptoms from prior to my diagnoses. I sought and received some excellent advice from the good people here and had their advice confirmed by my Rheumi. All this resulted in me resuming the 1 day 5mg then from there I am now on the 2mg again. At the moment I am doing fine, with no significant symptoms. I’ll see how progress for a couple more months before thinking again about reducing further.

Just thought I would bring you up to date.

I hope you are doing well.

Thanks.

Ron

[PMRpro Ambassador in reply to birdwatcher]

Ron - would you do me a favour and post this over here:

healthunlocked.com/pmrgcauk...