Hi all I have been in here a few times but I’m wondering if there are any men in their early 60s who are suffering with PMR if you could share their experiences I’m now on 8 mg a day still working with a physical job as a carpenter, but the lack of energy and the ability to fall asleep soon as I sit down is terrifying, ten pain in my right shoulder drives me mad and interrupts my nap 😴 Guess I just want to talk to some one who understands. I have even decided to sell my motorcycle that hurts but can’t see me being safe when I’m like this.
Best
Martin
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I am not a man with pmr but I know 2 men who have it. Both of them faired pretty well with the disease. They were able to take the prednisone, relieve the pain and came off of prednsione within 2 years. After the first few weeks of misery, they were able to get their life back pretty quickly. I wouldn't sell that motorcycle to quickly. See how it goes. It seems men often have an easier time of it than women.
Thanks for that it’s been 2 years now and I’m very frustrated just having a vent! But was interested if still working physical men of my age and how they feel both mentally and physically
I'm male and now into almost year five with PMR. Reading your post it seems you might have a couple of issues.
Firstly, I'm not sure I could have carried on with work, because with PMR you need plenty of rest and tlc. Are you able to get good rest?
Secondly, if you are in so much pain, I wonder if you are on enough pred. I can't answer the second question, but I guess that others may come along with some advice; or perhaps you should check it out with your GP.
Hi Martin - I was 51 years old and a very active senior Fire Officer, high altitude mountaineers and marathon runner when I was diagnosed with PMR (May 2013). There has been a lot written of my progress. I was a bed patient and in a wheelchair for 3 months due to the severity and rapid development of my PMR. Good friends and family, PMRGCA group, steroid reduction programme, hydrotherapy, physiotherapy and stretching slowly helped my rehabilitation. I've returned to the Himalayas (2015, 2017, 2019) and the Atlas Mountains (2016, 2018) and promoted PMRGCAuk through our many presentations, meetings etc.
I have my home page which you're more than welcome to visit. I'm also the PMRGCAuk North East co-ordinator and host meetings in the North East of England throughout the year. We have an excellent "Living with PMR and GCA" which we've sent to many people with PMRGCA. Happy to forward you a copy for a small donation and p&p.
I followed a structured Steroid Reduction programme for 21 months which I can forward to you. I never yo-yo'd but stuck to the rules ... never reduce more than 10% at any one time, take your Pred first thing in the morning and rest for one hour to allow the steroids to work. I suggest you contact your local PMRGCA group and visit pmrgca.co.uk/content/home-page
If you have any questions please contact me via HealthUnlocked or northeast@pmrgca.org.uk
That’s so positive thank you I changed my Preds to night time to help with the pain at night maybe I should swap back to morning?
I’m still wore fitting timber window a and doors with my son and can manage until noon when my battery runs flat. I have never been the sort to nap but I can’t help myself but feel guilty when I don’t pull my weight, I think half my problem is in my head! It would be good to get your reduction information and I happy to donate for more information.
Yep sleep better but when I sit down after a short while the pain starts mostly in my right shoulder and down the arm, but to be honest reading your PMR history I kind of think I should man up 👍 will have a look at your site
Except I have no PMR pain to speak of as long as I take the right dose of pred! I'm one of the lucky ones - the antiinflammatory effects lasts over 36 hour for me, even alternate day dosing works for me.
Could it be referred pain from something else? I've had a wonky shoulder for some time now but I'm sure it's not directly PMR. Both I and my physiotherapist think it's referred pain from my spine and physio helps (she understands about PMR so I don't have to do the standard elastic band stretches and repetitive stuff like that which is not always good for us PMR folk).
But it does sound like you need to take some time to let your shoulder heal if it is some sort of injury.
Not male myself but the only other person I know with PMR is male and he has a lot of other health issues. His family wishes he would just take a short walk every day, they believe, as I do, it would work wonders for him. So although your activity may not be doing you much good in the short term, and you're finding it difficult, if you can find a way to pace yourself and prevent further injury you may actually benefit in the long run.
Quick question fatigue evening the pain is under control but not all gone is it the PMR or the steroids that cause me to be so tired all I need is a 1 mile dog walk and I’m done in?
Pred doesn't cure anything - it manages the inflammation. The actual illness, an autoimmune disorder, chuggs away in the background, making you feel sort of fluey in a lot of cases and attacking the body tissues causing the inflammation which contributes to the ill-feeling and makes muscles less tolerant of acute exercise. Managing PMR is like having a dripping tap - you mop up the puddle on the floor rather than being able to repair the tap. Fatigue is a component of almost all a/i illness and there is no cure, it must be managed, mainly by lifestyle changes and adaptation and pacing. Boring I know - but it is amazing what you can achieve when you go about it the right way. Fightling doesn't work - accommodation usually does.
Hi, This reply might not please you but its my story, Started with PMR diagnosis August 2012 I've been up and down on the steroids several times flare after flare cannot get lower than 5mg some flares higher than that. I believe I had mild PMR symptoms for at least 15 years before I was diagnosed stiff shoulders and neck, so maybe i'm stuck with it forever. If you are suffering pain then your DOSE IS NOT HIGH ENOUGH I'm taking 9mg at present following a flare in the summer. And yes I to fall asleep if I stop moving and feel knackered after doing work or any exercise. By the way I still ride my ZZR1400 and have no thoughts of ever stopping that. Keep riding it will make you feel better I can't wait for the spring and sun shine.
Don't sell your bike bike you will be miserable. And up your pred if still in pain.
Hi, 63 year old male. Had pmr diagnosed over 4 years ago and currently on 16mg of pred. Gave up work at 59 as no energy and brain fog. Luckily I got I’ll health retirement. I’m in constant pain with my hips and shoulders but do manage some small jobs around the house and modding my mini. Gave up the bike years ago as realise I don’t bounce of tarmac so well and seen too many bad accidents. Have tried numerous steroid sparers and cbd oil, turmeric and laterally PEA all with no effect. Side effects from pred include weight gain, thin skin, muscle loss, insomnia and irritability along with frustration about not being able to do what I used to. I’m so fed up with people telling me I look well as I feel like crap. I’ve tried taking the pred at night, splitting the dose between morning and night but now just take it after breakfast. I hope you find some relief and can get your dose down without suffering.
Don’t sell that bike yet. It’s still early days. I’m not male but my husband rides so I know the joy it can bring.
I don’t have PMR either, just GCA but I do know how much Pred makes the muscles prone to injury and how it can make them really prone to damage from repetitive strain. It may well be that you need to shorten your work days in a decisively, without the guilt trip of course.
Hi Martin. I was diagnosed at 59 just over 2 years ago. 15mg of pred made me able to restart my quite physical job - event technician; building stages, rigging lights, etc. I'm now on 1mg daily and am aware that there is still a bit of pmr pain and stiffness in my shoulders but it is under control. I feel that I've had an easy ride in some ways but put it down to careful management of the pmr and being very aware of what my body is telling me that I can and can't do.
If it's just one shoulder that is painful it might not be due the pmr? I believe that pmr presents bi-laterally in most instances.
Hi multistrada I was diagnosed aged 53 put on 15mg after 4 days felt great went back to gym felt great till reduced to about 10mg and realised I had to cut out gym I can only work about 4 or 5 hours per day then start to struggle I also have bother with shoulders I have had scan on left shoulder which is worst and have bursitis and getting treatment from physio which helps physio told me the bursitis has has been caused by pmr. Jizer
I’m 62, diagnosed with pmr about 2 years ago. Couldn’t take prednisone b/c of a heart arrhythmia. Started on methotrexate, plaquenil, and an actemra infusion every few weeks. Took care of most of the awful pain - shoulders, hips, hands, wrists. Don’t sell the cycle. Things will get better. Hang in there. If you’ve got insurance, ask you’re rheumatologist about actemra.
Not at 60, but in retrospect around 67 started to develop early signs and full blown in May 2019 at 70yrs. I couldn't give up my Harley, just for discomfort that has been reduced a lot with the Pred. Now taking only 2mg daily...no energy loss, but have notice discomfort in my hands recently with intermittent tingling...? Arthritis or early Carpal Tunnel. Don't make too many life style changes yet...baby steps!!
Hi, I’m 65 and was diagnosed with PMR this past June after extreme pain 10 out of 10 on the pain scale in the back of my legs and quite sore (6) in my upper left shoulder resulted in my wife having to take me to the ER. After 1 setback (flare-up) I’m now slowly tapering to 10mg/d. I’m experiencing no pain even though I loaded up 29 eight foot 5 - 7” fence posts in my truck yesterday. Have a mild stiffness in my legs this morning, to be expected, but normal now.
Easier if you read my story in my profile so I’ll cut to the chase, if you are at 8 mg/d I’m sure any Rheumatologist is going to tell you that your Pred dose is too low. I’m NOT a doctor, but if I was feeling that kind of pain I’d either increase my dose to 17.5 mg/d for 4-5 days to see if the pain goes away or get an appointment with my Rheumy to discuss options.
Initially my Rheumy had me taking my full dose in the morning. After my flare-up where I went from being at 10mg/d for 2 weeks and jumping back to 16mg/d he suggested I split my 16mg/d dose in half and take it 2x/d about 12 hrs apart. At this time I chose to follow PL’s Simple Taper (on this site) and I’m now transitioning from 12 mg to 10 mg. Two things I’ve noticed since: 1) no feeling side-effects of the transition due to drop in dose and 2) no feeling of pain returning 4-5 days later due to overshooting the dose I need to manage the disease.
About a week ago I put up 400 ft of fence, next 2 days I took it easy...just to be on the safe side. Still fine.
However you do it, I think you need to increase your dose.
I live in Taiwan. Health insurance is great. Didnt know actemra wasnt approved for pmr only. What else do u have to be duagnosed with? Its worked like a charm for me.
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