I am a young 63 year old male, diagnosed with PMR last summer, and had almost no support from the NHS because of Covid - which I understand and accept, there are many people far worse off than myself.
I used to be so active, but struggle to do much at the moment, just going to work for a day is more than enough.
I am so pleased that I have found this forum, I have spent a day or so reading the posts on here and now understand my current issues.
I was started on 20mg and told to taper at 5mg every 2 weeks - obviously I couldn't, and kept upping the dose to 20mg, but got down to 5mg again recently but have just had a huge flare up which has now lasted 10 days - I have been having them every 3-4 weeks since my initial reduction.
Having found the forum and read the various posts, I felt better armed to discuss with my GP. What a difference - I spoke to one of the younger members of the Practise - I now have Pred Crisis tablets, and a plan to reduce at 1mg every 8 weeks and am going back to 10mg where I seemed to be comfy, but if not to try 15mg after a couple of weeks.
My GP is happy for me to take the pred at night, and I am looking forward to seeing if there is an improvement tomorrow morning, I am not expecting a huge difference, but any improvement would be good. To reduce the pain and stiffness would be great.
So many thanks to those who have contributed to the forum
Any advice would be much appreciated.
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MidlandTriumph
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Much more sensible approach from 2nd GP, 1st one had you on a kamikaze mission.....but if 10mg doesn’t give you at least 70% relief, hopefully more, then up to 15mg.... if you’re a strapping lad you may need more than some. I use the term “lad” loosely of course! 🤣😂
I used to be a LAD, still am in my mind, played lots of Rugby back in the day, was involved with Rock n Roll bands, still feel like I can now, but...
Your post was one of the first things that I found on this forum, and it makes complete sense, I understand now. When I was first diagnosed with PMR I had had a second TIA, so I suspect I didn't ask the right questions or even understand the answers from my Doctor. My bad ! but I kind of get it now, I need to improve so my poor wife and children can stop worrying about me, and I can get back to a more normal life over time. I hate the pred, it makes me grumpy and angry, so I was happy to aggressively reduce it, but the downside is the pain and discomfort that I now have from the PMR, which also makes me grumpy and angry - no win situation.
Can you help yourself with diet changes ?
Can you help yourself with a reduction in stress - mindfulness ?
I need to sort this, I know it won't be fast or easy, the doc's told me 2 years, its obvious it won't be that fast from the other postings, but at least I understand now, I'm in it for the long term - I can live with that - at least there is a way to improve.
This is probably the best thing I have found about this rotten condition, there is a way forward, there is a pain free future, at some time...... its a target, one I'd didn't think there would be...........
These are anti inflammatory foods - you probably already know -
tomatoes.
olive oil.
green leafy vegetables.
nuts like almonds and walnuts.
fatty fish like salmon, mackerel, tuna, and sardines.
fruits such as strawberries, blueberries, cherries, and oranges.
Some swear by turmeric - used in cooking, not supplements.
But a good diet cutting out/down on refined carbs is good for overall health.
If you learn not to hate the Pred it will help...yes it has side effects (good lord I know, was on very high doses for my GCA) it will become your friend, and taken at the right level will give you back your life.....maybe not quite as before, but enough for you and your family to enjoy.
Grumpy & Angry might be okay in a Disney cartoon, but in life they become very wearing, and stressful....something else your PMR will thrive on.
Anything that reduces stress is good, I do Pilates or Yoga (plenty of videos on line, but go for seniors levels if not already a participant), music (if you still play an instrument) - anything really that YOU enjoy and gets you away from thinking about your illness.
Am always happy to talk about the 3 Rs......Exeter & England for the first.....a variety for the next two.....but as I’m 10years older than you, then you’ll have to go some to beat the King in his prime in my eyes 🕺uhh, huh!
While that is a perfectly reasonable approach where a rheumatology patient has had a flare and the pred is being used to combat the flare until other medication kicks in - it absolutely does not work for PMR where the pred is the mainstay of management. If they want to diagnose PMR - why can they also not look up how to manage it!!! Nowhere would it suggest reducing the dose like that!
I was diagnosed in hospital after I had had a second TIA, but my discharge was rushed, and the hospital was swamped with Covid. TBH I wasn't right, I was "slightly confused" and just wanted out of there, because they were swamped with Covid cases. To be fair the care was fantastic, and so were the staff, but I wanted home so much, just glad to be discharged
It fell down when I probably hadn't listened to the Consultant, and my GP's were overburdened, and I didn't know the questions that I should have been asking of the GP's who were also overwhelmed.
Hi! One of the most difficult things to achieve is "acceptance"- we have all gone through what you have and all the fight/grumpiness etc just pulled us down. Take heart! Most men have an easier run than women - and are often off pred quicker.
Hello! I was a very fit and healthy 60 year old 2 years ago when I got PMR, and I have been able to do as much exercise, and more, since then. I have reduced slowly, and am.now at 5mg, and although I dont like taking the Pred, it is working, and the side effects definitely get less as you reduce. Im a very positive person, and I get outside every day, whatever the weather brings- I walk about 30 miles a week, shorter walks on my 3 working days, and longer hikes on other days.Really hope you will feel more settled as you find the right speed of reduction - it does get better!! Best wishes, Louise
Hi, I can relate to the pred making you grumpy but found that passed after time. Perhaps I got used to the pred? Unfortunately I’ve been trying to reduce from my starting dose of 15mg without much success. I’ve tried all sorts of things like splitting the dose, or taking it at night, reducing every 4 weeks by 1 mg and the DSNS method and 6 years on I’m currently trying to go from 14mg to 13mg.
I have tried all sorts of steroid sparers without success. CBD oil, PEA, Tumeric etc have all been tried and made no difference.
It’s not great at the moment, quite stiff and in pain but bearable. I am cutting out carbs where I can and have lost a decent amount of weight which makes me feel better but hasn’t reduced the pain.
Fatigue is a real issue as I cannot do things like I used to and have to keep taking breaks. I’m getting better at recognising when I’m getting tired and then take a rest before I injure myself (I mess around with wood).
If your managing to keep working you’re doing well as I had to take I’ll health retirement when I was 59, I’m 64 now. Along with the constant fatigue and pain it was the awful foggy brain that meant I couldn’t do my job.
Like you I have found this forum absolutely brilliant and far more informed than the GP’s. Good luck on your journey😃
In hospital I was diagnosed 18 months ago with A symptomatic PMR . My consultant recommended a combination of methotrexate and steroids because steroids on their own were not working. Today I am down to 3 ml steroids and 3 methotrexate. What I found the most useful advice was to reduce slowly. I found every 6 weeks to be ok. Whenever I had a flare I increased my steroids by 1 ml.
Hi Midland Triumph. I've 'been there and done that' so I would like to give you hope!
I was 59 (male) when diagnosed in Dec 2017 so am 62 now and I think that my PMR is more or less done. I started on 15mg of Pred which was almost a miracle for me - pain and stiffness gone virtually overnight and I was able to resume my work (Live Events Technician so lots of physical stuff).
Using a taper plan, I reduced the pred each time by 10% or less over 4½ weeks and then stayed on the new dose for another 4 weeks until I was sure that I wasn't feeling any return of the PMR. If I felt stiff or had some aches, I would go back up and then try again after a couple of weeks.
Going down to about 8mg was fairly straightforward but from then on, the gaps between reductions got longer as I wanted to be sure that I was ok to move on -sometimes, a 5% reduction would help me to stay on the lower dose. A pill cutter and a selection of 1mg, 2½mg and 5mg tablets made the calculations easier and a spreadsheet told me what selection of whole or half pills to take each day!
I was down to ½mg in April 2020 and 'bounced around' a bit between that and zero for a few months before eventually realising that I hadn't taken any for a good few weeks and haven't since. I still feel a bit stiff in the morning before getting up and after I have been sitting down for too long but generally, I think that the PMR has left me and I am ok.
But yes - us blokes generally seem to have an easier journey through PMR than women.
So I hope your journey is as easy as mine. Is the Triumph a car or a bike? (or an outstanding success at something!)
Took my meds (10mg now) at 2am this morning, Much much better slept all day till now, much less pain and discomfort, feeling quite chilled now. Still a little stiff, but NO pain.
The Triumph is a car or maybe more than one !
So pleased I have found this forum, and so thankful for your advice.
I get this now, slow and steady and don't expect too much. Just don't want to be grumpy with my family
You might consider letting your wife read my information post- then she might have some idea of what your illness means - the more she understands the better you both will cope.
This is a straightforward explanation of your illness for starters -
Your immune system has stopped working correctly so your body is in effect fighting itself.
In your illness, it causes your blood vessels to become inflamed so the blood doesn’t get around to feed your muscles in your shoulders, arms,hips, legs which results in stiffness, pain and fatigue.
The only way to control those symptoms is to take steroids until the illness goes into remission.
You might look fine and normal on the outside, but inside it’s a different matter altogether.
Hi ,don’t try to cut down too quickly, at first when I was diagnosed all I wanted to do was get of the medication but this isn’t the answer just try to get down to a dose that keeps you comfortable and moving easily, when you are reducing cut down very slowly (there is a good reduction chart somewhere on this site ) I found it best to stay on the lower dose for quite a while weeks even months to see how your body is coping.Be careful with your diet I put about a stone and a half on in the first year now I am very careful with the carbs and sweet food and have lost the weight I gained. You can carry on a normal life I am self employed and work full time in the Summer.Look after yourself and give yourself a break ,have Merry Christmas.
I was a little bit older than you when PMR struck three years ago. Otherwise fit, my early mistake was to see reducing Pred and beating the disease as a competition! People on this forum, helped me simmer down. I reduced very slowly but even then had the odd hiccup and had to increase the intake a couple of times. Still, I'm down to 1mg these days and accept the odd creak or stiffness as tolerable and nowhere near how things were at the start. I have found regular exercise - within the constraints of PMR - useful ... walking, stretching and light weights. Main thing is to hang in there and believe that things will improve. I wish you well.
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