How do YOU decide whether and how much to change your dosage?

Angela you have got PMR. It will only go into remission when it wants to. The important thing is to ensure the inflammation is under control, not how much pain you can deal with. Your blood markers ESR and CRP should give you the results of any inflammation. Short term you can have steroids for your hip and shoulder, but longer term you will still need steroids for the PMR. We would all like to get off steroids, but by stopping taking them too soon and putting up with the pain may mean that the PMR will really come back and bite you. In the end you may find that you are having to take steroids longer than if you had just slowly reduced and not fought it.

Angela, I have heard that not treating PM can sometimes lead not only to increased PMR symptoms but also to development of CGA with its very real possibility of blindness.  It is this possibility that keeps me on pred, because I feel just as you do and now that I know what pred can do, I would be prepared to revert to the way I was with PMR a few months ago.  But my eyesight is precious to me and that trumps everything else.

I completely understand what you mean and if the symptoms of GCA were prominent then I would have no hesitation in taking the pred. In my case at the moment all symptoms of GCA have gone and with the blessing of my Rheumy I can reduce the pred but I can have steroid injections in my hip and shoulder as pred is not working on it. I am not trying to advise anyone, why would I?  To be honest I may be wrong and only time will tell but this is the way I want to go. Good luck all x

 

And good luck to you too.  Let us know how you get on!

I had hip bursitis which was managed with steroid injections - and I was able to reduce my pred a lot - I'm not off pred altogether as the PMR seems still to be active though.

I also had back/shoulder problems due to myofascial pain syndrome (MPS) which was better at higher doses of pred and returned as I reduced. That was also managed by the pain clinic here in Italy with steroid and muscle relaxant injections into the back muscles as well as manual moblisation of the MPS trigger points. As well as that, I and others have got a lot of relief for these sort of add-on problems using Bowen therapy - reduce those pains and you need far less pred. That might be worth thinking about. The number of cortisone shots you can have a year are restricted to finding other ways of helping the problems is important and Bowen does seem to and is being trialed by a pain clinic for patients in the northeast of England.

It is interesting - a study was done some years ago where it was shown that the normal secretion of cortisol in the morning was depressed more if you took 5mg at night than 15mg in the morning. So the assumption made by non-endocrinologists was that you should take the pred in the morning. As I understand the overall picture - I haven't been able to discuss this with an endo specialist though - when we are taking pred it is over a very long period. Once you go into the realms of months rather than just weeks the adrenal secretion of cortisol is suppressed anyway and on high doses it happens in a matter of 3 or 4 weeks. It makes no difference then for us when we take the pred - the natural production is suppressed anyway. Above all - if you don't take your pred until the middle of the morning, for many people it often takes until mid-afternoon to kick in - like you Bacher, I could barely move all morning and by about 3pm it was beginning to work. If I took it at night though I got up in the morning able to just about function and by mid-morning felt human. The day was some use. So if you are on a short course of pred for an infection/asthma exaccerbation or something, taking a 3 week course of pred is better done in the morning so the adrenal glands get back to normal afterwards as quickly as possible. For us, on pred for a couple of year at least, it probably is far less important. If it works better taking some at night so we are able to get out of bed the next morning, so much the better.

I really cannot see that, if you are on 60mg of pred, your adrenals are going to secrete much cortisol in the morning or any other time. So taking the pred at the time that provides the best relief from symptoms PROBABLY also means you will need less. And I am prepared to argue my case with rheumatologists.

Eileen, would you expand on your first two sentences, please? I don't understand why "nonendos" would reach such a conclusion from that study.

Not sure what you want me to say to expand the first 2 sentences other than what I wrote afterwards.

The study showed quite baldly that if you took 5mg at night before going to bed, the production of cortisol the next morning was suppressed. If, on the other hand, you took far more AFTER you got up, the production of cortisol the next day wasn't affected. The message is that if you need to take pred, take it in the morning and your adrenal gland production of cortisol won't be affected.

In most cases of pred use it is short term - maybe 1, 2 weeks to reduce swelling due to inflammation in joints or lungs for example. If you take it in the morning with breakfast your body will still produce its own cortisol next day, the adrenals continue working "normally". When you stop the pred you are straight back to normal production with no difficulty.

However, in longterm use of pred at whatever dose, after about a couple of months things change. Adrenal function is suppressed. Non-endocrinologists would probably take the study at face value and say it is dangerous to take pred at night so you mustn't do it. Endocrinologists would see there was a different scenario and that the situation will vary as a result. 

That was what I meant. 

Eileen, I believe that the study you are citing compared a delayed-release nighttime dose with a larger non-delayed morning dose.

The study I saw was in the Int'l Journal of Clinical Rheumatology by Zakout, et al.

Further, they noted that the delayed release pred level peaked at around 0200. That is one of the reasons that I set my alarm and take my pred around that time.

Or perhaps the studies we're talking about are two different ones.

"Or perhaps the studies we're talking about are two different ones."

They are. Samy Zakout's publication discusses the effect of a timed release prednisone tablet on morning stiffness which correlated with a decrease in noctural IL-6. Their first comparison was between 7mg Lodotra administered at 10pm and 7mg ordinary immediate release prednisone administered in the morning.  

This is the abstract:

"Background Musculoskeletal stiffness in polymyalgia rheumatica (PMR) follows a circadian rhythm. In rheumatoid arthritis (RA) patients, a timed release tablet of prednisone taken at 10pm led to a significant decrease in morning stiffness which was correlated with decreased night time plasma IL-6 [1]. However, the effects of timed release glucocorticoids on morning stiffness and the circadian profile of IL-6 in PMR have not been investigated. Previous studies of cytokines in PMR only collected blood samples at one time point mainly in the morning, without specifying the exact timing [2].

Objectives To determine whether IL-6 follows a circadian rhythm in patients with newly diagnosed untreated PMR, and to compare the effects of morning and night time glucocorticoids on overnight IL-6 and morning stiffness.

Methods 10 patients with newly diagnosed PMR were randomised to two treatment groups with either night time modified-release prednisone 7mg (Lodotra) or morning immediate-release prednisolone 7mg. Hourly blood samples over 24-hours were taken before (Night A) and after 2 weeks treatment (Night B) to measure plasma IL-6. Patients were then treated with morning prednisolone 15mg and after 2 weeks a single measurement of IL-6 was performed at 9am (Day C). Duration of morning stiffness was recorded on each occasion. IL-6 assays were performed in Germany using the MILLIPLEX MAP kit.

Results IL-6 showed a marked circadian variation in PMR, with a rise during the early hours of the morning which was partially suppressed by 7mg morning prednisolone and almost completely suppressed by 7mg night time prednisone (Figure 1a and 1b). Night time prednisone reduced morning stiffness by 90% compared to 42% with the morning prednisolone (p=0.044, t-test, figure 1c).

Conclusions PMR, like RA, has a marked circadian variation in plasma IL-6. Both IL-6 and symptoms of morning stiffness are suppressed more by night time low dose glucocorticoids. This observation raises the possibility that PMR may be controlled by lower doses of glucocorticoids given at night compared to current conventional morning treatment."

This is a paper looking at the use of Lodotra/Rayos which was developed as a result of work done in Germany which established that the optimum time to take immediate release prednisone to prevent morning stiffness is at 2am - hence the development of Lodotra, a delayed release form of prednisone which you can take at 10pm and it releases in a single dose at 2am. I have referred to it repeatedly in the past as the optimum time to take white, uncoated, immediate release pred.  

The paper I'm referring to was looking at the production of the adrenal hormone cortisol in the early morning which is what normally happens. Taking pred at night suppresses it, taking pred in the morning, after the time at which the adrenals normally produce cortisol, suppresses it far less. Cytokines, IL-6 is one, are the inflammmatory substances that cause the inflammation and, hence, the stiffness in PMR. If you suppress them then the morning stiffness is reduced - in both PMR and RA. Cytokines and cortisol are two very different substances and I think you may be confusing the papers.

Unfortunately I can't find the references at present - they may be on another computer to which I currently have no access. 

Thanks, yet again, Eileen.

If I 'm reading all of this correctly then the lesson for me seems to be that taking my methylprednisolone around 0200 is best for minimizing the dosage that will keep stiffness/pain under control.

It also seems to mean that when PMR decides to leave me alone and preds are no longer needed normal adrenal function can be restored sooner. ?

Probably and possibly - though I don't think anyone has looked at the 2am dose helping adrenal function. The hope with Lodotra/Rayos is that lower doses are just as effective and that should reduce all side effects. 

Right. My comment about restoring normal adrenal function more quickly was based on the idea that lower cortisone dosage would be easier for the adrenals to adjust from than would higher dosage.

Well yes - but that is the point of the very slow reduction in dose below about 10mg - it is three-fold: in order to identify the lowest dose that manages the symptoms more accurately, to minimise the effect of steroid withdrawal and to allow the body time to readjust to the reducing amount of artificial corticosteroid the body is working with. Sometimes doctors forget about that final bit and insist that 2mg can't be doing anything, stop pred altogether now. It may be that your body still needs 1mg (not impossible) but a 2mg drop at that stage is a big shock to the system.

Right. So take preds at 0200 or so if at all possible. 

Personally, I am fortunate to have found it to be rather easy to do with little impact on sleep. I recommend for anyone to try it.

You aren't the only one - one or two others have tried it. They reckoned if they were awake at some point anyway, why not. It worked for them. I get to do it the easy way - Lodotra at 10pm! It's the only alternative to medrol available here and NOTHING would induce me to take that again as I was very unlucky with side effects! Apparently I shouldn't get it as it isn't approved here for PMR, just for RA - but the 40kg weight gain is a good enough bargaining tool I think.