I was diagnosed with PMR about two months ago, I saw a consultant who sent me a copy of his report with instructions of how many preds I should take I started on 15 mg for 28 days, then reduce to 13 for 28 days and reducing for up to two years.
Since being on this group I am amazed at the number of people who ask how they should reduce their intake of preds am I lucky in having full instructions from my consultant. If I waited for my GP I think I would still be waiting.
I find the site interesting, Thanks stay safe everyone.
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Gardenbay
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I was diagnosed last October, and when I mentioned to my GP that I had a "vague headache" he increased my Pred to 40mg. I think he was suspecting GCA, which is certainly wasn't. I've been struggling to get someone to listen to me ever since. Was down to 9mg a couple of months ago, but have had to increase to 10 and then 11, and now 12 the past few days. Weeding is bringing the shoulder pain back again. And the groin. Should I be on a dose that ensures no pain at all, no matter what I do?
No - because you might decide you need to live at a high dose which in the long term is not a good thing and something to try to avoid. Unfortunately, pred isn't a way to return to your previous normal and if you try to do so, it will cause other problems. Boring as it may sound, you have a "new normal" and if you try to push it too far it will cause problems in both the short and long term.
You have to balance what you do as part of the management strategy. If a particular activity causes pain either avoid it, find another way of doing it or break it up into very small bites and spread it over days rather than hours.
Pred has cured nothing - it combats the inflammation that is the cause of many of the symptoms and allows you a better quality of life in the meantime until the underlying autoimmune disorder burns out and goes into remission. In PMR it does eventually do that for the majority of patients - something found in few other a/i disorders. There is no cure - even when it is in remission there is the potential for it to return at a later point.
The a/i part of the illness is still there while you are on the pred - chugging along in the background and leaving your muscles intolerant of acute exercise. If you try to do too much, your muscles can't tell you to stop before you go too far, the DOMS (delayed onset muscle soreness) will be worse than you expect and take far longer to recover than you were used to. If you REALLY overdo it, it may lasts weeks before you are pain-free. And pushing through it means that the tiny tears that are what result in "training" as they heal never do heal and the pain never goes away properly. Rest days are an essential part of living with PMR - not necessarily doing nothing, but using different muscles from yesterday. And often it needs more than just one day between.
Repetitive actions - of the sort your shoulders are subject to when weeding - are particularly bad to do a lot of, so while short bursts the activity with long rests between might be manageable, spending the entire afternoon doing it isn't, especially when you do it day after day. And the pain you get is more an injury, not PMR inflammation so more pred isn't the answer because it may make the healing process longer. Plus, pain is sign there is something wrong - covering it up isn't the best way to deal with it if it is muscles that need a chance to heal.
Many thanks for this, PMRpro. Months ago my GP told me to increase my activity level, walk further, do more exercise, etc.. I think that may have caused quite a few problems. Reading posts on here, I've realised - perhaps a bit late - that GPs really don't know very much about this disease at all. I remember one, many years ago (we'd been away in Africa for 40 years, and I didn't understand the allusion), saying to me "trust me, I'm the Doctor". Obviously she was alluding to the Dr Who saying, but I didn't know it at the time! However, I have now come to understand that questioning the GP is a far better way to go. Thanks again.
I just have this hope that one day all these doctors will get PMR themselves - there was one former GP a few years ago who said she now realised what she'd put her patients through! Some years aago at a medical meeting I met a rheumy who had developed an inflammatory arthritis and she also admitted her relationship with her patients had changed greatly for the better after the diagnosis.
I think that's probably why my GP is relatively good. He let slip one day he'd been on steroids himself for a while. He didn't say what for but he's much more relaxed than some other GPs I read about on here at letting me reduce as slowly as I need to.
You may have a guide to reducing from your rheumy but there is no guarantee that his version will work for you (or anyone else). Top experts recommend each step down shouldn't be more than 10% of the current dose and even that can be too much for some people. You are also not reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms. And PMR doesn't only last for 2 years. At 2 years, about 1 in 3 patients has been able to get off pred - by 6 years half are off pred, the rest of us may take much longer, albeit at a fairly low dose. No two patients are the same - in any sense - so a rigid timetable rarely works but should be adjusted to the individual patient.
What often happens if that the patient doesn't get off pred as easily as the doctor envisages - and some of them will try to saddle the blame on the patient. It isn't anyone's fault - it is the way PMR is. But it may well be the doctor's fault if the patient ends up struggling because the doctor doesn't accept PMR has its own rules and they can't change them by force.
How I wish that PMR and GCA was a straight forward auto-immune illnesses. However 'straight forwardness' does not apply to any auto-immune illness that I have either come across or heard about and there are listed 800 Orphan illnesses listed and registered with EULAR last time I looked.
Each persons body is different in many many ways. How, as individuals we respond, is also different.
The one thing that applies to 99% of patients, I can only think of one but I could be wrong, is
Prednisolone
There are , so far, 83 registered side effects and all can be dealt with, hopefully successfully. The one unregistered in my book is 'Steroid Brain Fog' or 'Treacle Brain'.
We do know that PMR & GCA are now more well known and much more research is being undertaken and that is a very good move forward.
The cleverest Consultants cannot know how we will respond as individuals, they know that nothing is set in stone, but do not know how to cope with this problem. We all like things set in concrete and that just does not happen in any walk in life.
The trick is that we have to learn, listen and sometimes fight our corner.
Many moons ago PMRpro explained to me how statistics work - yes I was completely ignorant and this has stood me in good stead over the years. The Bell Curve.
I had heard of it and looked it up and still did not understand it.
PMRpro told me in words of one syllable how it works and what is means. Once I understood this, I was then able to combat - statements made that sounded like they were set in stone and then did not work for me. Using the 'bell curve' over the years, stood me in good stead during my journey with GCA and since.
So I suppose the thing I am trying to get across, is learn to listen to your body and heed what it is trying to tell you.
For example, you are peeling potatoes at the sink and suddenly feel exhausted, stop and leave the potatoes they can wait, go lie down or just sit and look out of a window, don't try to work through it, it won't work PMR and GCA is the enemy and your immune system is asking for help in the fight at that moment.
You have made arrangements to go out on a certain day, and feel grim - just cancel it and when you make arrangements always add, 'if possible as I might have to pull out at the last minute. Family and Friends will understand, those that don't tough.
Well, I never expected to write this down..............but I used it over the years with newly diagnosed patients whom I came across and today I felt like sharing 15 years of learning.
There are always some people at the outside edges of the curve - and 2.5% of the population are either "too high" or "too low" - but still perfectly normal. For them ...
I too had a rheumatologist who gave me full guidance when I was initially diagnosed with PMR he told me that on his reduction plan I would be off preds in about 18 months time when I asked him for more detail he said that he had 25 yrs experience of treating PMR and had never known his plan to fail . That was 8 yrs ago I am still on preds although a very low dose 2 1/ 2 mg at the moment although I did have a gp who told me that I may never get off preds . I still haven’t given up hope I am still trying to reduce further. Wish you luck on your journey which can be long for some shorter for others. Cheers John
Well on the good side you had instructions, something some can only wish for. Also, they didn’t expect it to be over in a year which takes the pressure off a bit. However, many docs do seem to forget the most important variables, individual differences and LIFE with all its ups and downs, both of which can scupper any plan on paper. Some have to cut their drop in dose to 0.5mg for example. Another common miscalculation is the speed or lack of that the adrenal glands regaining full function. For most, the lower they get the slower they must go. Anyway, cross that bridge when you get to it, but be aware and good luck!
If the instructions from your GP work for you that is fantastic, but I would estimate that well over fifty per cent of doctors’ recommendation are too “enthusiastic”. A lot of doctors seem to have a fear of steroids and push to get us off them as soon as possible. My rheumatologist wanted me to reduce 5mg initially after three weeks, which caused me to feel like death warmed up, he totally ignored my complaints and said I had to reduce 2.5mg in the next month. I assumed wrongly he knew what he was doing!
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