I'm a 70 year old man and former marathon runner. After retiring I've been working out several days a week. I thought I was in perhaps the best shape of my life. I even thought I'd pulled a groin muscle working out but it wouldn't seem to get better with rest and PT. It then spread to my other hip and both shoulders. My trainer suggested it was from being sedentary after 2 years of vigorous training. Then I got the diagnosis of PMR from a Rheumatologist. He started me on 15mg of Prednisone 4 days ago. My symptoms have not gone away completely but are somewhat better perhaps 50%. My questions are:
does anyone get over this completely? and how long?
What do people do for breakthrough pain?
Does anyone else desire an occasional beer or two while on Prednisone?
also How the F#%& can this just happen?
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PMR48
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Stick with us. It’s a hell of a shock and a journey. But you are soooo lucky you have found this forum. You will need to work hard on your mental attitude but you will get through this. Xxx
Welcome -We all feel you, take your time and read through the threads to get educated. You will find you are your own best advocate. Your education will help you organize your questions for your doctors.
Can’t help on the beer. Others may have better advice on that front. And certainly a question you should ask your medical team. My husband is on several heart meds and is allowed one beer per week and I know he savors every drop.
We are all learning as we weather through this craziness that most of us were unaware of until it chose us.
Most importantly remember you need to rest more than in the past.
Beer! Yes of course! So sorry you are depressed. In my humble opinion, 20 mgs would mop up the break through pain and cheer you up. It is a normal start dose. Stay on it for at least a month and then taper down very slowly by 1 mg, once a week then twice a week until you are on 19 mgs, then do the same until you get to 18 mgs if all feels well ( pause if it doesn’t). When you get down to 10 mgs, consider tapering down by half a mg ( get a sharp pill cutter). Exercise, but moderately. You are starting from a very fit position that has to be a good thing!
The vast majority of people get clear of PMR , the average time is just shy of 6 years. If you take care of yourself, pace your activities, take the taper steady, you will be able to live a normal life.
I don’t think autoimmune diseases come out of the blue. Have a think about what’s been happening in recent years, the clue maybe there. Stress is a big factor for most of us. Stay in touch with this great community, it really informs and helps. Jane x
Hello and welcome to the club that none of us wanted to join but well here we are. At least you have found a very good place for help and information sympathy, encouragement and the occasional laugh. Yes most people do get off the pred eventually, the answer to your question how long is well how long is it piece of string. Sorry. Usually men have a slightly easier journey. The ‘aunties’ who are much better informed than I and have got the t-shirt etc will be along soon to answer any questions you have. I would suggest you read a few of the older posts and yes you can drink alcohol while on pred. All good wishes.
Welcome to this wonderful forum (and the club no one wants to join!) where you will find lots of helpful information and friendly and exceptionally well-informed support.
Yes it is a shock and it’s not really very clear how it can just happen but it does. Very often there has been some kind of stress, often major stress, prior to the onset of PMR.
Most people do get over it completely and the average time is six years.
Not sure what you mean by breakthrough pain? If regular painkillers work on it it isn’t PMR pain. The pain of PMR is managed by the Prednisone suppressing the inflammation. 15mg is the usual starting dose and it may be that a higher dose is required initially to mop up the excess inflammation if your symptoms continue. The aim is to find the dose that manages the inflammation and keeps it in check so that we can live as normal a life as possible. Once the inflammation is under control a slow taper plan is followed to bring us down to the lowest dose that works. For instance I started on 15mg two years ago and I’m now on 6.5mg.
I personally avoid alcohol on Pred because it doesn’t suit me but I know others here enjoy it so I’d just do what works for you. Weight gain is very often a side effect of steroids though so you might want to bear that in mind and many of us find a low carb diet is very helpful.
Hope helps to answer your questions and other forum members will no doubt be along shortly...
Hi, may I suggest the book by kate gilbert, PMR/GCA. I found it very helpful when first diagnosed (I diagnosed myself). I had never heard of this condition until afflicted with it. This is a wonderful forum with many knowledgeable and understanding members.
I am so sorry you have been diagnosed with PMR, it is life changing. Pred should give you at least 70% relief. Perhaps you need a slightly higher dose.
I hate beer but a nice Burgundy is not to be sneezed at!
Diagnosed 2 years ago, active 70 year old woman taking no pills, having no ills.........started at 15mg went up to 20 ...much better .... then started the 1st taper after about 4 weeks or so. Now at 1. Don’t hurry it. Most side effects are from the prednisone, but it is truly the miracle drug for PMR imho.
Beer, yes, shouldn’t be a problem.
Depressed...stick with this fabulous bunch and get informed...knowledge is power! It could lift the depression!
Ups and downs..take them day by day. Rest often, even to sit for a few minutes, or maybe much longer. Overdoing it is very easy once you start feeling better (you will).
Sometimes men have an easier time than women....stick with forum...these wonderful people know more than doctors!
Consensus is stress is the cause (comes in many forms!)
Good luck! You control the PMR. Don’t let it control you!
The beer question never occurred to me. All the time I was on Pred I drank as normal, mostly cava or cider, and I started at 60mg because of GCA. I'm off alcohol now because I am on Methotrexate as I have vasculitis in my major blood vessels. The 60 mg, not surprisingly, got rid of all PMR pain within hours. While still on Pred I also decided to get fitter and started Jillian Michaels 30 Day Shred DVD which I found really hard as I hadn't exercised since school (and as little as possible then) and I was 68 or 9 at the time. No doctor ever told me not to drink or exercise so as soon as the pain went I carried on as normal, although doing a lot more because the 60 mg turned me into a Duracell bunny. Within a month of starting Pred we moved house. I can remember spending a morning painting a room in the new house then coming home and spending the afternoon packing up hundreds of books and lugging the boxes from one room to another. I hadn't found this site then and didn't know they advise taking things easy, not that I probably could have with all that Pred whizzing round inside me. I'm not recommending what I did, it is probably all wrong. It's just that this was my experience.
I well understand and sympathise with your depression. Like you and most people on here, I loved physical exercise and was a long distance walker. Polymyalgia arrived out of the blue. That was getting on for 4 years ago. Being honest, life has never gone back to how it was. My steroids are down to 1mg on alternate days. Like you, 15mg improved things but didn’t get rid of the pain so my GP increased it to 20mg which mopped up the rest of the pain. People definitely do get off steroids because the disease goes into remission. I was off steroids for a couple of weeks but then suffered a flare. Currently reducing very very slowly following advice from here. On the question of how long. I think the average is around 3-5 years. For some shorter and some longer. Can’t help you with the beer but can’t see any contraindications. Hope this is helpful.
It happens because sh** happens. My PMR is mostly gone after @ 2.5 years. I am on 1 mg daily. You have to accept it, learn about PMR and then learn to live with it. I was lucky as it wasn’t too bad. Best info here.
Welcome! I too was a marathon runner and couldn't really understand how I could go from running 5 days a week to practically needing a hoist to get out of bed in the morning. This was 2.5 years ago and I'm one of the lucky ones. I'm now off pred and while I wouldn't say I'm 100% better, it's pretty much 90%. I still have mild shoulder stiffness and my inner thighs and groin are a bit iffy but I can run again - not the mileage and pace as before, but I'm doing it. As for the beer - go for it. I didn't give up alcohol at all while I was taking the meds - in my opinion, we need some vices to get us through the PMR journey. Good luck and as the others have said - this is a great forum to have a moan on and ask questions. One of the hardest things about PMR is that unless they've had it or got it, people just don't understand the pain and can be very dismissive of it. Well, no-one on here is as we've all been there.
Bad luck, but welcome aboard. I sometimes wonder if I’m the only bloke on this site! I’ve found it really useful and the ‘Aunties’ referred to are fantastic. I agree with the advice that you should read quite a few of these posts. You’ll not only learn more but realise that compared with some we’re really lucky.
I’m 74 and woke up with this 15 months ago. Now working on getting down from 5 to 6mg for the second time. Was here about 3 months ago but self medicated up to 7.5 for a while which helped. My Doc is a friend who does extreme things for charity. He must be about 60 and cycled Joggle in a week a couple of years back. Climbed Mnt Blanc this year! He chided me for going up without speaking to him and said that I should see him again if it gets too tough, he’ll get another blood test to make sure it’s not something else. My docs at my surgery are fantastic, again much luckier than done on this site.
They’re happy for me to enjoy beer or wine provided I don’t exceed 15 units a week (that seems to be general advice these days). I’m off it at the moment as I’m on my ‘ski suit diet’ for this coming season. I reckon Pred puts weight on!
Since retiring 4 years ago at about your age I cycled quite a lot more than I had and love it, but not to your extent.
PMR is a bummer. Don’t fight it, go with the flow a bit. My feeling is that exercise helps get adrenalin going and improves my mood. Skiing and cycling both make the quads shout but I find that if I push through it gets better. Don’t overdo it, you’ll regret it for 2 days! Must meet my mates for Saturday ride, so take it easy, try yoga, listen to the lovely Aunties and enjoy your beers.
Whoops 😬 Thanks for pointing that out! On a more serious note, my experience via friends and on this site, is that PMR does seem to predominate within the fairer sex. (That’s probably non PC comment 😳) Is there any research on this?
Yes - there are about 2 to 3 times as many women with PMR than men. That is a statistic that extends to almost all autoimmune illness - more common in women than men. And no - no-one knows why although some suggest hormones have something to do with it...
I’m a 68 year old male from Perth, Western Australia. (Originally from Liverpool, UK) I have also kept reasonably fit playing football until late 40’s and then tennis and now down to golf twice a week. I think I have had PMR for some time as I had hip pains some months ago which I put down to golf, also found it uncomfortable sitting through long seminars. Anyway I woke up unable to get out of bed and in severe pain and was diagnosed with PMR four weeks ago. Doc put me on 15mg and paying dropped by 70% overnight but when I got back to the Doc after week he wasn’t happy with my improvement so jumped up to 30mg (but I only went to 25) following week I was I had around 95% improvement so I have tapered down to 15mg again over the last two weeks. I also sore a Rheumatologist early this week and all my extensive blood and urine tests came back as normal. I am planning to stay at 15 until I get back from a two week holiday in Bali and then drop to 12.5. I also love a beer but have avoided it since diagnosis. I googled like mad when diagnosed and right or wrong my conclusion was that pred was managing the symptoms but believe leaky gut my issue so immediately changed my diet, bought a juicer and have lots of lovely fruit and vegetable drinks, have lots of ginger, aloevera etc. however I have given up anything with wheat and oats so beer is out but still enjoy cider, wine and a G&T. I also returned to golf today and work out twice a week. I am still working full time as a Business Development Manager and now have no PMR symptoms. I do get slight night cramps in my calves which Doc says is the pred. Seems everyone reacts differently to pred but I have set myself a target to drop to 10mg by December and then slow down and taper off pred in another 4 to 6 months. I am no expert like some on this site but just thought my story might be of interest.
Gluten-free beer is available. Not sure what it is like (I don't drink beer) but my husband developed a taste for low alcohol beer when he gave up alcohol for a while last year... It is always worth a try.
Try magnesium supplements for the night cramps - pred makes us lose magnesium via the kidneys.
You can set all the targets you like but it is a habit best left at work: PMR is the boss, as long as it is active you will need pred and it won't take any notice of any target. They can land you back at the bottom of the hill if you stick to them and won't reassess so think hard about following a timetable.
Good luck with your plan mate. No simple solutions to this one! We all hope it works for you. Different experiences for us all on this journey. Keep us informed how it's going.
Hit this wall myself at 68. But the age link concept may be looking a bit dated now! ATB
There is always an up side, pred has all but got rid of the psoriasis in my ankle, since being diagnosed and changing my diet I have lost 3 kg and feel fitter than I have for some time also my wife tells me I have stopped snoring, in fact she keeps prodding me to make sure I’m not dead.
I think you got to have a plan, it could bite me in the bum but I will give it my best shot, I see it as a challenge but I think I am up to the contest. Maybe mental attitude has a lot to do with it, I have been competitive all my life and like a challenge.😀
Just a quick update, as you know from my initial post I planned to taper to 10 by end of December, however my Doc has insisted I stay on 12 over the festive period as I am hosting Clients at the Hopman Cup in Perth and this means the usual obligatory consumption of alcohol. Doc felt due to this combined with the usual parties and increased activities at this time of year I should suspend my taper and then drop 1mg/month for the next 3 months. I am still lucky that the only side effects so far has been slight night cramps. I have increased my exercise level slightly to compensate for festive indulgences.
How is your journey progressing?
Best wishes for 2019 and lets hope all our tax funded researchers find a breakthrough cure next year👍
Hi Johnny. Good to hear from you.... Always it's a personal journey & you seem tuned in to how it's going for yourself. Keep going the way it's working out. Don't push it too hard else it will take it's revenge & take you back again! ... Great information & support on this forum.
GCA myself & pleased to be holding at 10 at the moment. Have other health considerations as well so nothing is straight forward!
ATB for 2019. Keep us informed how it's going matey. Cheers
A couple of my earlier posts say much the same. Rather than a fiercely competitive match, though, I try to treat it as a ‘friendly’. I.e. I don’t like losing but try to smile in the same way I would when losing to a good mate who has a lucky putt on the 18th!
I even ‘talk’ to it. When the shoulders ache (most mornings) I roll them and circle my arms saying ‘come on fellas, don’t give me a hard time today’. Sometimes on the bike the thighs talk back. ‘Come on Dad, we weren’t expecting to go up here today!’ Oh well, it amuses my long suffering mates.
An international cyclist, now retired, talked to his legs when they said stop we are hurting, he ordered them to “shut up legs”. That’s another bit of useless information for you. 😀
Wotcher Whacker. From the other side of the river, me, but worked a few years in the Pool. Still support them. Doing well so far this season 😊😊
I reckon Pred gives cramps sometimes, too. I’ve given up on the golf. I think the frustration made the PMR worse. That’s a reflection about learning how to learn with this B thing.
First of all - there should be no breakthrough pain if you have achieved anything like pain-free now. As you reduce the dose of pred to find the lowest dose that manages the symptoms as well as the starting dose did, the way you feel now is your guide. You should never feel worse at the end of a taper than you did at the start. But after just 4 days at 15mg and 50% pain-relief it will almost certainly improve - you need probably a month at 15mg to find it, maybe 20mg. My bursitis associated pain took a few motnhs to go but I had had PMR for 5 years without a diagnosis or any treatment.
I don't drink beer - but I haven't changed my drinking habits (wine and prosecco mainly as I live in Italy) : I have tried not drinking to see if it helped the PMR. It didn't.
It didn't just happen - over the years you have had various stressors that impacted on your immune system, even simply aging is a factor. Eventually a straw broke the camel's back and your immune system went into overdrive and started attacking your body tissues as foreign because it lost the ability to recognise body as self.
And the better news: 95% of patients get over PMR sooner or later. some 20% are off pred in a year, a third or so in 2 years, half by 5 years.
Men tend to do better overall and be off pred in a shorter time. And the fitter you were before PMR appears, the more likely you are to be able to continue exercising during PMR albeit it at a lower level, especially at the start when you really do need to regard it as re-training and building up slowly again, not at the usual rate of training.
I can’t comment about bursitis, but agree with everything else.
The other thing I forgot to mention to PMR48 is that I find it really important to warm up thoroughly before exercise and stretch afterwards much more than I ever used to. Regular stretches help anyway.
It seems many of us on this site were extremely active pre PMR. After 17 months I am down to 2 mg of Pred. I started at 25 mg for 6 weeks to manage initial pains. I go to the gym 5 days a week and walk the other 2. Lighter weights and shorter workouts took quite an adjustment mentally. By 4:30 pm I’m in pajamas! Autoimmune part of the illness hangs on. I stopped alcohol upon diagnosis and substituted 2 large squares of dark chocolate. Sugar aggravates inflammation.
Welcome to the forum. Sorry to hear you've been diagnosed with PMR. I was diagnosed in the summer and I felt it was the end of the world, but after a week or so, I realised it's not the end of the world - I take my pred, the pain and discomfort have gone, and I get on with my life. I'm sure once you've had a couple of weeks to sort out the correct dosage and to get used to the idea of having PMR, you will feel more positive.
Beer? Yes, please! I regularly have a beer. It used to be wine, but I inexplicably went off wine when I was diagnosed with PMR. Strangely, I have been hankering after a glass of wine recently - perhaps it's a sign I'm getting better?!
There's lots of help and support here, so don't feel you're dealing with this on your own.
I was diagnosed a few months ago, started at 15 mg. It didn’t keep me pain free for 24 hours, so my GP upped it to 20 mg. A miracle happened! Pain free after so many months. Am now down to 15 mg, ready to start my next taper.
I hear your pain! I too was extremely active and at 70 actually felt the best physically than I'd ever done in my life: strong from weights, flexible from yoga and Pilates and getting in lots of hikes and walks. Then, like you, I got some stiffness and thought I'd overdone it in a session. But the pain didn't go away and voila PMR/GCA. After 18 months I'm still in shock about the whole thing and mourn my old. This forum is absolutely the best support I've come across in my hours of research into the topic. Trite as it may sound if you focus on what you can do as opposed to what you used to do it really does help in getting better and moving forward. Stick to the treatment, become well informed and you'll make it. We all seem to be pretty determined types on this site and the encouragement everyone gives helps us all. Welcome.
Hey, man, I’m in the same boat as you. I could and did run up and down hills in Aug. But in mid September everything began to unravel. I also said what the f*** is happening to me. It sucks. The good ladies here think that guys might have an easier ride through this. Well, for all of us guys stuck with this thing I sure hope so. Keep in touch. Don’t overdo anything. Anything over a 2 mile walk for me is too much right now.
John was a firefighter, ran marathons and climbed moutains when he developed PMR so badly it put him in a wheelchair.
He says
"I've found having PMR is weird but at the same time wonderful. I've learnt so much about myself and others as I've climbed my own personal mountain. I haven't fought the illness ... I've worked with it. People suggest I'm lucky to be a man and only 51 years old when my new friend Polymyalgia came to visit my body ... and "yes" I was but there are other important things to consider before I went on my "personal expedition". I've found having PMR is like climbing a mountain. The Fire and Ice Team has a motto "Invenium Vium aut Facium" which means "I'll find a way, or make a way" ... which is true for Polymyalgia sufferers."
You’re right, slowly but surely. My wife has had PMR for 5years as opposed to my 15 months, poor thing. Still, we managed a great 12 mile walk a couple of weeks back. Took it gently, had a picnic and a promise of an overnight in a cosy country pub. Pretty cream crackered but endorphins help steroids, I reckon. Good luck on the journey. Don’t despair. You’ll get there 👍🏻 Pym
Thanks 3, I've been working my way through the 7 steps. I recently cut the Pred from 15 to 12.5 with only minor discomfort. I also live in PA where medical cannabis is legal and I've found that a combination of high CBD and lower (1:10) THC has been very helpful in fighting the inflammation and pain.
I've had to taper in 1mg drops from 15mg downwards, and now below 10mg, only .5mg drops. I'm in Canada where medical and recreational cannabis is legal, and have found some success with CBD/THC.
Traveled down to Pittsburgh last week to see the Pens play (sat two rows behind their bench). Always loved the city, and the team!
Just to say that as a 69 very fit woman diagnosed end of August 2018 and needing 22.mg prednisone to get relief my first thought was that you need a higher starting dose. The second thought reading your post and reading it aloud to MY 70 year old fit husband was gratitude. I reckon that my man might have got what this has been like for me.... hearing the shock and dismay in a male voice...imagining himself perhaps in this unenviable. BTW A nice red wine continues to be one of life's Joy's.
My wife has had it about five years, so when I woke up with all the symptoms whilst touring the Scottish Highlands in a large rented motor home last year we were pretty sure what it was. After she sympathetically helped me change my pants and socks she said ‘I told you it hurt!’ She didn’t HAVE to generously give it to me to prove her point.
I certainly don't wish it on anyone. Realise for me the inability is the issue now that there is little actual pain. That frustration that is new each morning as I start the day ready to bounce into some project and realise over again.....it's still there... pacing. The chronicity...hardest thing to take on board or explain. Along with that the gratitude for relative ability.
Welcome, can't add much to the above. We men if heavier may need a higher starting dose? I started on 30 for 3 days, magic. Then drooped to 20 and pain returned. Self increased to 25 which did the trick and sat there for six weeks. I don't know what stress I had but was also diagnosed with b12 deficiency at same time. That may have been the the stressor.
I am so glad that you reached out to this forum. I am so sorry to hear you were diagnosed with PMR. I was 56 years old and swimming a mile a few times a week. Then BAM. This disease rocks you, but you will find great support here. I love to be athletic, too. Such a big part of my identity, but I have learned to try and enjoy what I can do. It is a process to acceptance. Please do not be hard on yourself. You will find appreciation in smaller moments. I found a small yoga studio that is owned by someone with Fibromyalgia. There is meditation and movement is adapted for your comfort level. Now I am not swimming, but I am part of a community that cares about their body, and I am doing what I love. I have realized what my limits are and just work with what I have. Slow steady movement, ease up when muscle pain or tension is present. I rest if I need to. I have to park my ego at the door before I go in. Health is about taking care of the body you have. I struggled to find a group activity that I could still be me. It is a change, but you are not alone. We will be here when you need someone to “listen” or help you understand the disease. If I could give myself advice when I was diagnosed, I would say you need to give yourself time to adjust. Balance movement with rest periods. It is not your fault. Be gentle with yourself and give yourself time to adjust. You grieve, get mad, and then try to find a happy “new” normal. I am sending you positive thoughts and reaching out is a great, positive first step. I am rooting for you.
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