Just Starting Pred! What is my correct dosage?

Because I didn't know that pred wasn't a cure, and I had such a miraculous response, I was sure I'd be finished in three months!  This was mid 2015.  Nearly two years later I can say I've successfully tapered quite low, 2 mg at present, and happy enough with this.  I now know, thanks to this forum, that PMR never goes away.  It usually goes into remission eventually, which is a good thing, but that's the best that we can hope for.

Thanks Jean. Hope you make a speedy recovery!

Thanks Anhaga. I'm aware it's only surpressing the symptoms, but i'm not getting enough repression yet! Good luck with the tapering.

 

Thanks again for your wise words Eileen. As ever, I don't want to believe you! 

Sometimes I don't want to believe me. But I do have the courage of my convictions...

Hi EileenH. Thanks for all that. I'm aware of the surpression of the adrenals' cortisol production by Pred and that we are only treating the symptoms and I'm not even beginning to think of tapering yet.(Excellent article posted by you on this forum regarding tapering btw!) My difficulty atm is trying to find a dosage that last's me the whole day with some sort of relief. After approx 12hrs after the dosage the stiffness starts to return and worsens. It takes approx 2hrs after the dosage for the symptoms to slowly start reducing. I'm a big build 15st guy,(Not overweight), so i'm wondering if I have to keep raising the dosage or stick with this for a while to see what happens! Yesterday evening was tough at work for the whole shift, (2-10) with the stiffness in my calves and hips almost as bad as the worst they have been, yet I awoke with minor tension in my Calves yesterday. Could the fact that my muscles still tightening as much, be down to the dosage being too small, or is it the residual effect of the inflammation in the muscles still? If so, how long can it take for the muscles to clear and is there anything else I can do or take to move it along? Massage and stretching make it worse pretty quickly, even if I do it gently! I have to say that I am lucky as I am not really in pain other than soreness, but my muscles do get very stiff and this is what makes me tired. Thanks for the book list etc. Are there any you would recommend for the place I am at atm? Sorry for such a large message and so many questions and thanks for your time EileenH.

Then you may benefit from splitting the dose - and possibly even the top recommended dose which is 25mg now (see the 2015 Recommendations, Recommendation 3 for your GP's benefit). The antiinflammatory effect of pred lasts 12-36 hours depending on the person and it sounds as you are a 12 hour end person) and some people find taking about 2/3 of the dose in the morning and the rest later in the day (what time depends on you, perhaps 2 hours before the stiffness reappears?) gives them better management. Some doctors have a fit about the later dose claiming it suppresses the adrenals more - at this stage, above 10mg, your adrenals are going to be suppressed anyway so it is immaterial and you need to get the best out of the dose. The later dose should carry over into the next day and you should then not have as much morning stiffness to cope with. The optimum time to take pred to avoid morning stiffness is 2am - the pred reaches its peak in the blood about 4am, ready and waiting for the inflammation (emplained in the next paragraph) but since you are getting symptoms back after 12 hours you have a double whammy.

Part of the problem is the fact the pred only suppresses the inflammation - the actual cause of the symptoms we call PMR is an underlying autoimmune disorder and that continues in the background, releasing inflammatory substances every morning about 4.30-ish - which attack the tissues and leave your muscles intolerant of acute exercise. One of the things we push is avoiding the activities that make it worse where you can. If you have to work - obviously you can't do that as easily as most of us and we do notice that people who have to work need higher doses to keep functional. Which brings with it an increased likelihood of side effects which for some people in the long run includes muscle wasting. It is an increasing problem - in the past most people who developed PMR were women over 60 - 3 times as many women as men - but they usually weren't still working. That is probably why doctors perceive it as "only old people" (the average age at diagnosis is said in the literature to be over 70 but I don't believe it) and that everything is tickety-boo once you are on pred. Elderly ladies then sit and don't do heavy work! 

PMR should be covered by disability law - is there any way your employer can make reasonable adjustments that would help? It is possible to build up the "training" if you do it REALLY slowly - but that isn't an easy option when you have to work a full day. 

Great stuff. Thanks Eileen. This confirms pretty much what I have been feeling about it all since the diagnosis. I'm going to give the split dosage a try from today as that makes more sense for me. It is going to take a bit of juggling to find the optimum times though and I still have a feeling that 20mg is not enough for me yet. I feel it was the viruses that ultimately triggered the PMR and what I am desperate to avoid is any muscle/organ/body memory of my present state being 'set', by experiencing it for a long period. I would prefer to take enough pred to clear all symptoms for a period of time so that I can have a base to work from. If I am still experiencing symptoms, how can I realistically start to reduce the pred? My employers are pretty good, but we are just about to enter a very busy spell and I am going to have to have a sit down with them and explain in detail what it is all about if I can't get it fully under control.

" If I am still experiencing symptoms, how can I realistically start to reduce the pred?"

You can't - unless you are sure the ones that are left are not going to respond quickly. It took a few months for the hip pain I had to fade - trochanteric bursitis and the bursae don't have a good blood supply and it takes a lot longer. My feet and hands were slow to improve too. Tenosynovitis will tale time - and that may be the cause of the muscle tightness.

You could be very naughty if you have enough pred to spare - try 25mg for a couple of days and see it if makes a significant difference quickly. Then, if it does, take the 2015 Guidelines to your GP and point out Recommendation 3 and the top dose they suggest. He may be willing to start there with you. It is relatively new - and GPs are famous for not reading guidelines...

Eileen..... you read my mind!! The hip bursitis was the worst discomfort initially and that is where I tend to feel it now when walking and in the calves. I've started the split dosage the last two days and it seems to be improving things already! Best two days I've had since it all started!!! I'm taking 10mg at 10:30 and 10mg at 22:30. I'm going to give it until weds then speak to my doc if I feel that an extra bit might make the difference. Interestingly, the 'old' aches and pains that I used to feel are returning and general, 'looseness' of joints. I'm taking this as a positive sign!! Never thought I would say I would be happy to have my old back ache back!!!! Thanks again for brilliant advice and support! :-)

Thanks for that Dan. I am a big build 15st bloke. If I work on your calculations, I would be taking 22.5mg/day. I am on 20mg for the last couple of days, but no major change yet. I have dogs and love walking, so am desperate to get back to being able to go for walks. good luck with your tapering!

I disagree - you can have things that mimic PMR or are indistinguishable that won't respond to a PMR-type dose (i.e. under 15-20mg). Myofascial pain syndrome is just one - it is also caused by the same cytokines as PMR but they are concentrated in discrete trigger points and it takes a very high oral dose to really deal with them. Other techniques - including manual ones with no pharmacological side effects - work far better.

But some people are never totally free of the symptoms that are part of PMR - until it goes into remission. It is unusual to be pain-free - and when doctors say you will be they are being unfair in creating false expectation.

Thanks Daniel. That was my thinking. I'm sure I can have less stiffness and soreness than I have! I don't really get pain if i'm honest, other than aching. I'm a big built bloke of 15st and yet most people seem to start on 10-15mg. If these are average starting amounts then they must be set for average size people? Taking an average size person of 10st on 15mg/day, the maths would show that I should be starting on 22.5mg/day? Can you remember what amount you started on and how long was it before your symptoms cleared on that dosage? Did they only partially clear and then you had to raise the amount, or did you stay on the same dosage and they cleared after a period of time? I'm glad you're free of it! It gives us all hope!

Everyone is different in the amount of pred they need - either because they don't absorb as much as others, that can range from 50% to 90%, doctors assume 70%, and because the effect doesn't last as long, as I explained above. A study in Italy showed that 75% of patients got an acceptable result within a month when started on 12.5mg - and that small women got a faster response than large blokes! Surprise, surprise!  However, they are so desperate to keep the steroid load as low as possible they choose the lowest effective dose - and 15mg is felt to be OK for most people. As I've said, the latest recommendations do now allow for size etc and say the "lowest effective dose in the range 15-25mg. But the whole idea is that you start at a dose that should work for everyone and then taper it down slowly to find the lowest dose that manages the daily new batch of inflammation. You are exceptional - large and still working a heavy job.

Most people do get off pred eventually - but you say yours started after several virus infections: if you are very lucky it may be a post-viral version and may disappear relatively quickly. And men DO tend to do better and experience pred and PMR differently from women. Most of the people I know who have got off pred quickly are men.

I also am a big build. I do not know in stones but I weight 235 lbs. Three times I was started with the rapid two week step down starting at 60 mg down to ten than held at 10mg. In reducing slowly from 10 mg when I got to 7.5 one time the symptoms came roaring back and I had to jump back to 10 mg. That worked very well and I eventually got to zero almost a year later.

Thanks Eileen. All of what you have said above confirms my thinking and feeling about my situation. I am really hoping for a quick return to health, but in the meantime, it is all about getting it under control and management. All of your suggestions have been extremely useful. Thanks again.

 

Thanks Daniel. It may be that I need a larger dosage to get rid of the symptoms for a while. I talked with my old GP last week who raised me to 20mg. He said that up until last year, he started most people on 30mg, but my new GP was up on more modern studies which recommend 10-15mg as EileenH reported above. That's why I started on 15mg. I have had an asthma attack during the hayfever season years ago, which resulted in me taking 80mg of pred a day for 7 days, then reducing 10mg a day for the following week. I experienced no side effects and actually felt great if I remember correctly, so I have no fear of taking large dosages in the short term, if it gets it under control. Thanks again for your input.

It's come full circle again - although they do warn about going above 30mg. The problem when GPs start patients on high doses is that a rheumy has their view clouded. Other things will respond to the very high doses and then it only becomes obvious when they get back to about 20mg that perhaps it isn't PMR after all. It is such a problem with so many of these inflammatory conditions having no definite tests. That is what is needed above all - even more than a better drug. That is going to take many years to develop - a test doesn't have the same problems.

Interesting points Eileen. I don't want to wait for an almost definite diagnosis though. I haven't even got an appointment with a specialist yet! I want to crack on and get it sorted asap, whatever it is. Most likely, whatever it is, is the same treatment using pred anyway! 

 

There's no "getting it sorted asap" - it is an autoimmune disorder and all you can do until it goes away in its own good time is manage the symptoms as best you can. You have to look at it from the positives: PMR at least goes away for 75% of patients in up to 6 years. Most a/i disorders don't, they are there for life.

Ooops - but you do need a almost definite diagnosis - because while PMR only responds to pred, other things may respond better to other drugs. Not that that is an excuse to experiment for an impatient rheumy...