I was diagnosed with PMR three months ago and my GP in Spain is pressing me to start medication. Whereas I am not a 100% anti- Farma conspiracy theory nutter , I have with the exception of a brief course of antibiotics for a tooth issue, never taken medication . To date ( I am 66), my body has served me well and dealt with any medical issues on its own. I can deal with the pain ( sometimes extreme) and the bouts of immobility and am fearful of embarking on a long term course of steroids and other invasive drugs. I am also aware of the 15% possibility of getting GCA.
Questions:
1. Have any of you out there chosen to not medicate and if so with what results?
2. If I don't medicate, would I get good warning signs of the onset of CGA and thus be able to medicate if the case?
3. Have any of you beaten PMR without farmaceuticals?
I may elect to medicate but I want the choice to be mine and based on statistical probability and case studies and not simply on what is the norm!
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Laurenceseidler
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The answer, maybe if you’re one of the lucky ones that only has a mild form, but the one thing you have to remember is that the inflammation produced as part of the disease if not controlled can lead to a lot of other issues, not least GCA (as you’ve mentioned) …a much more serious “sister/brother ” illness which can cause loss of sight …and maybe LVV (large vessel vasculitus).
I didn’t have a choice, my GCA unfortunately was mis-diagnosed for 18 months and I lost sight in right eye…which then led to v. High doses of steroids. Better to take a lower dose for PMR - and hopefully stop things escalating!
Some do get warning signs for GCA, but there have been people on here that got none until sight loss - not worth the risk in my book, but then I’m biased!
I appreciate you taking the time to reply and your honesty. The more I read of others misfortune the more I rage against the dismal destiny of age and decay and my wonderment at the strength so many people show in adversity. I have allocated you a hug from my collection.
hug gratefully received!...as my late hubby would say .."never let the b**%4rds grind you down".. and I don't!... and I am a Viking goddess so nothing stops me - see link -
you also might like to read this - maybe not for the faint-hearted (and I don't want sympathy, I certainly don't need it, thanks)- life does go on after GCA and all the other rubbish it can throw at us -
I didn't CHOOSE to not medicate, I wasn't diagnosed. But I had 5 years of increasing disability, isolation and pain that I spent a lot of time and money on trying to manage. I had a gym membership that allowed me to do aquafit, Pilates and Iyengha yoga which kept me fairly mobile. But they did nothing for the pain that was relentless even if not excruciating. I was lucky - it didn't actually progress to GCA which is more likely if PMR isn't treated. But I lost 5 years of my 50s to untreated PMR - and it does look as if not managing the inflammation like that can result in a much longer journey, one I am still on after 12 years of being on pred which does at least allow me to function reasonably well and reduces the pain element. I had a minor miracle in 6 hours with 15mg pred - suddenly I could move freely and walk down and back up stairs normally - not stomping down like a toddler and crawling back up on hands and knees.
No - you may NOT get any warning of GCA developing, some people wake up one morning with loss of vision - and once it has happened to one eye, there is a 50/50 chance the other eye will go in the next couple of weeks.
You won't beat PMR - it may eventually burn out and go into remission, it does for most people but that isn't you beating it. But half need up to 6 years to get there and the rest of us take more than 6 years to get off pred. It is thought about 40% still need a low dose of pred after 10 years. It can be a long and painful time - because no other painkillers do more than take the edge off the pain.
I had been healthy all my life and had never even bought an over the counter med or had an antibiotic when I got PMR. In the end I could hardly move it just got worse and worse and my doctor kept saying it was a virus. I went privately to a rheumatologist who diagnosed PMR within seconds. Steroids are a wonder drug and within twenty four hours I was back in the land of the living. Have you thought of trying steroids for a week and see how you feel? You can always just stop after that short space of time. You may find that it may not be PMR you have and the steroids don’t work anyway as PMR is difficult to diagnose.
Hello, first of all you’re not beating anything; your body is in deep distress and is attacking itself. Tough love rarely works here. The Pred is there to stop the damaging inflammation until it calms down. Pain = inflammation so being able to tough out the pain isn’t really a positive action. Given people’s aversion to Pred I think if there was a guaranteed alternative we’d hear about it and there is no lack of people trying, I can tell you! I think that probably makes up for the common argument that research is never done on cheap alternatives to Pharma. To counter that, Pred is cheap. Research is easily found online. The trouble with sitting it out is that GCA doesn’t necessarily give you warning. Occult GCA can cause blindness as the first symptom. Beware also that stroke and aneurysms are a greater risk now and neither of those have reliable signs to warn you.
The main thing to think about is if you medicate properly now your starting dose will be 15-20mg and reduction from there after a month or so. If GCA arrives it will be 40-100mg that will be non-negotiable if you want to avoid blindness. PMR doses are a walk in the park compared to GCA doses and your cumulative dose over 3-4 years will be much much higher.
I can guarantee we all begin this upset to be taking a medication for a long time which can make you feel worse (except pain) in the short term.
It's not depressing. It's good news! There's a reliable treatment to be had for pennies that can restore you to a fully functional life, and for most people is practically risk-free with the proper precautions re: diet, vitamin supplementation, and good rest. There are literally hundreds of thousands of pred users around the world, and have been for a couple of generations now. (PS: No company is getting rich manufacturing pred.)
Most of us were also healthy and strong all of our lives - the movers and shakers and doers in our work, our families, our communities. Many of us have had to take a step back, and in ongoing years need to skip over some things, but we're still here and we're still smart and sassy.
Pain is useless suffering. There's no virtue to it. No one benefits. It steals sleep. It limits motion. It clouds judgement. It sucks the joy out of life. It turns you into a crotchety old lady long before your time.
There's a lot of information on this site about living with pred and PMR including what to eat, watching your weight, taking calcium and D3 to protect your bones, finding the best level to control your disease activity, and other things you can do to diminish or eliminate side effects. Read about the experiences of other PMR patients, and what's worked for them. There's a lot of hard-earned wisdom here, and no small amount of patience to answer your questions.
Believe me, if there was something else as effective in controlling our condition we'd be using it or doing it. So far, this is the best we've got. And considering where we started, and the levels of pain we dealt with before we were diagnosed, it's a miracle.
I too had a busy life and career without medications - until an under-active thyroid (another auto-immune disease) hit me for six and I had to retire early, unable to function properly. Thyroxine corrected that after a while and I eventually enjoyed an active retirement taking that one routine med and feeling quite proud of myself. Then GCA struck in 2019 and after 8 weeks of flu like symptoms, some of the classic GCA symptoms appeared one weekend - strong double vision, painful to touch scalp and jaw claudication. In 2 days 60mg of prednisolone gave me the illusion of recovery. It wasn't of course, just control of symptoms while the GCA inflammation hopefully burns out eventually. But it never occurred to me not to take the prednisolone - its effects were so clear-cut and instant. Had I had ‘only’ (forgive me everyone!) PMR I would have done the same. The medication is appropriate to the task and works. It is cheap as chips to produce and I understand that Pharmaceutical companies make little profit from it, so there is no deep, dark motive behind its prescription. Good luck.
My PMR began in late 2017 as I turned 57. I worked full time and had a very active social life. I didn't seek medical advice so took no medication. I managed to keep working but had to give up my social life to cope and save energy. Between early 2018 and late 2019 I was seeing gradual improvements and hopeful of an eventual end to my struggles.
In December 2019 the full symptoms returned (back to square one!). I sought medical advice, went through some tests, was diagnosed with PMR and started taking steroids in April/May of 2020.
For me (but not the same for everyone), the side effects of steroids have caused as many problems as coping with the PMR symptoms (some side effects can be managed/reduced in various ways).
GCA can be diagnosed in people with or without PMR, and in those taking, or not taking steroids. I think it's rare for someone not to have noticeable symptoms, but can't point you towards any data about it.
The question of managing PMR without steroids is a regular one, but I haven't seen updates on this site from anyone who has chosen to try.
I think it's rare for someone not to have noticeable symptoms, but can't point you towards any data about it.
Yes it is rare, but certainly not unheard if, we have several family member on this forum over the years advising us that their parent or partner has lost sight (partially or fully) to GCA with no apparent previous symptoms. As you say, not sure there is any proven data on this aspect.
Interesting thread. I am also interested in the emotions expressed in your post. If there is one thing PMR has taught me it's patience, even the ability to accept (at least to some extent) what life has thrown at me. Believe me, I was always one to kick against the pricks. My future father -in-law introduced me to the Serenity Prayer - you know courage to change the things I can change, patience to accept the things I can't and the wisdom to know the difference. Something over 45 years later I began to "get " it, and only because I became ill. I have never thought about "beating" PMR, only about controlling it. And pred is a two-faced friend (I wrote a post about that once) but really, all we have, and if treated with respect we'll get the best from it.
We also need to be kind to ourselves. It's almost as hard to accept we're really ill as it is for our friends and family when they see how well we look when we start pred. However we have to remember we have a serious systemic disease. It won't kill us, but we do need to be careful to get our rest, avoid stress as much as we can, and in general try to slow down and enjoy life where and as we are.
I absolutely chose to medicate but it wasn't an easy decision because I knew the potential side effects of steroids.
Now, 18 months or so down that route I wouldn't change my mind other than to have made an earlier effort to reduce sugar and eat well (lockdown didn't help!)
There is no substitute for being able to move relatively pain free. Even now I still get those days when I feel I can't manage the residual pain. What I'm saying is that you may feel as though you are managing now but that level of pain and stiffness becomes harder and harder to bear. And that low level 'ill feeling' like you have a cold without the runny nose.
It's your decision of course it's just we don't see anyone manage without pred here. Most cave in but then you might need a higher dose to dampen things down.
For what it's worth, I think you're right to question and come to the right decision for you.
I so agree with how you feel. I am basically an alternative patient.. but I see I’m going to have to take steroids as there seems to be no option. I did have pmr in 2017 and resorted to steroids which after 6 months worked. I’ve been free since then but the second Covid jab triggered it again.. I gather I was not alone !it’s been so painful and I’ve had sleepless nights … And I’ve decided to go ahead with predisolone and hope that sessions of acupuncture and cranial osteopathy will help to alleviate the side effects . Good luck with what you decide!
All of the above comments/answers to your post add up to a consensus i.e you need to take prednisone! One of the things that is said about PMR is that if you HAVE to get an auto imune condtion get PMR because a) most of the symptoms are relieved with pred and B) it may not last for ever and often burns out within a few years.
None of us want to be on pred and I flat out told my GP I wasn't going to take steroids when I was first diagnosed over four years ago. She calmly beckoned me over to her computer, showed me the red flag and said if she were in my place she'd be taking pred. She then told me about the possibility of GCA developing. I got off my high horse and submitted. Of the side effects, weight gain has been the worst for me but at least I am able to live my life relatively comfortably.
Hi, we all have our stories and reasons for choosing to take the medication. For me it was clear that this was going to require some effort on my part and if I was going to summon the strength to change my life, I needed not to expand most of my energy on tolerating pain and lack of mobility. I decided early on to be kind to myself and treat my body with gentleness and gratitude. Needless to say, the lessons PMR taught me are some of the most valuable ones. It was also important to have no doubt about the diagnosis, and once I was sure about that, I was ready to have the treatment.
Think of it as a temporary assistance while you get on with healing your body by giving it all you can; rest, nutrition, movement and compassion. You need to be at peace with your decision.
I wish you all best and a trouble-free journey.
Good luck I am no expert but if you become as I'll as I did you will have the. Choice of dignitas or steroids. I took steroids for 10 months from 15 to zero. I am 16 weeks pred free I might be deteriorating slowly I take 200/400 mgs of ibuprofen which eases the pain in my hands and left tricep.
The side effects of the steroids were very unpleasant and I am trying to avoid restarting them.
Life without the steroids is quite good but I am enduring some pain in the hands and minor levels of stiffness I am banking on the burn out but if not steroids it is.
I know of one sufferer who has declined steroids and is trying HOT HEMP CREAM massaged daily into his arms and legs I don't know how effective it has been.
In conclusion it seems to me the choice is extreme pain or steroids.
I hope you are taking food with ibuprofen. Before PMR diagnosis I took 800 mgs ibuprofen a day for months for pain which created an ulcer, discovered two years later when given blood thinner for knee replacement. Now I must take omeprazole, another drug with bad results,
Somehow, the doctors don't often suggest a PPI when they dish out the NSAIDs - the collective of adverse effects for NSAIDs (renal, cardiovascular, gastric) makes pred at low doses for PMR look quite reasonable ...
Thanks for the advice I take a stomach protector my dose is relatively small I went two days without but had to take some today. Onward and upwards best wishes
As many others will tell you, you never get rid of it ,you merely suppress the painful symptoms. I do believe a good healthy diet including all the necessary vitamins and minearls is helpful as it is in most diseases
Hi there! I had PMR . It started January 2017 and by April 2018 I was fine, I needed some exercices Ot due to loss of range of motion and had problems with bending my knees due to the stiffness, I am OK now. I refused the prednisone and changed my diet, followed Anthony William recommendation in his book, drank lots of celery juice and took supplements like Turmeric, bromalain! Serrapeptase. Best to you!
When my GP diagnosed PMR and mentioned steroids I was adamant that I was not going to take them. I thought that I could manage PMR on my own. Three weeks later I was back at the surgery asking for the steroids! Eight hours later and free from pain I am thankful that I gave in. The benefits have outweighed by far the few side effects that I have had and most of them I have been able to adapt to anyway.
Hi there Laurencesseidler.Welcome to this site. There are some wonderful highly experienced caring people on this site who continuously give their support especially to the newcomers such as yourself.
I haven’t been on this site for some time as I have very limited experience of this debilitating autoimmune disease PMR especially when it comes to prescribed medication. Also I was and am hoping to have a success story to report to you all.
I was on 20 mg of prednisolone daily tapering to 1 to 2 mg of prednisolone for 22 months and now I am off it 25 months. My main problem all along apart from before starting on Prednisolone when it would take me almost a minute to go up the stairs was chronic fatigue every day. While I was on the steroids the fatigue was worse. I still have it while off for past 25 months but less severe. The steroids were brilliant at the start but the big unanswered question I still have, should I have gone off the steroids after say six months when it was clear while on them, my fatigue wasn’t improving? ie would my adrenal glands have recovered?? My full story posted last year is in there somewhere on this site and I am largely trying to get better using the same strategy but with some changes. I have some degree of success but am striving for greater improvement. I wish you the very best.
" it was clear while on them, my fatigue wasn’t improving"
But that is not a case of proving the pred is bad - that is because the pred doesn't cure the actual disorder, it is a management strategy for the symptoms caused by inflammation in the tissues. The fatigue is a component of the autoimmune part of PMR and that is independent of pred. Relieving the inflammation does prevent some of the damage - but it doesn't switch off the tap of inflammation.
Thanks PMRpro for your thoughtful reply and insights and also for your ongoing dedication to helping others on this site. I take on board what you said and if I get any PMR related pain which I haven’t had for 3 or more years now I will be hot footed back to my gp for a pred script. Thanks again and I wish you all the best in your own recovery.
I can`t find a button to make a reply to everyone and don't want to burden you all with reiterated replies to all the kind people who have taken the time to join this thread and enlighten me with their views and experiences. So this is meant to be a summary response to your collective outpourings.
First and foremost. Thank you!
Collating all the replies their is clear general consensus ( 97%) that medication is the way forward. Most ( over 90%) come to this conclusion via the "better the side effects of medication than the pain, depression and immobility causes by PMR" with a few citing the risk of GCA as the reason.
The same with vaccinate or not with the mantra " better to risk PMR from a vaccine than dying of Covid" a regular feature.
So, you might have guessed by now that I am into statistics. What most people don't realise is that every aspect of our lives is underpinned with statistics and that their interpretation is unique to each of us and thus what we should and shouldn't do is as well.
Personally, based on my specific profile - age, medical history, lifestyle, location and social habits - my chance of a severe outcome ( death or acute and chronic illness) from contracting Covid-19 is around 1:62.000. This is truly trivial : my chance of dying when I used to go climbing averaged around 1: 100 and a gladly took on those odds. Given the probable casuistic relationship between my first Covid vaccination and the onset of PMR ( or perhaps GCA - a future thread) I will not, based on probability, be having another jab.
The same is true of medicating or not. There are no sicknesses, just sick patients ( as my lovely Spanish GP says). Each of us is a tiny world and we need to make decisions based on the values we hold. Pain and immobility .v. drug dependency, potential weight and bone issues plus the raft of other med side effects is something we all need to weigh up as individuals. I am pain tolerant and turn my immobility to advantage ( se below) yet am deeply worried about getting fat ( just me!). That's why the matter of early warning or not of GCA is so important to me though again, personally speaking, going blind in one eye doesn't distress me as much as it might others ( I find eye patches sexy - my first girlfriend had one - and have seen enough of life to picture everything worthwhile in my mind).
What does worry me is a comment made by one of the members who told me to "get off my high horse and ... medicate". Taking control of our own health, asking as many questions as possible, putting everything in doubt until we have enough proof and data to be certain or at least sufficiently sure, is not arrogance but just good human behaviour. People apparently look at an average of 17 models of fridge and compare prices of 11 sellers before buying. Well, if we do that for a box in the kitchen, surely we should push the boat out when making one of the most important decisions in our lives? Sorry, but I am a living being and I have a right and even duty to question and challenge everything until satisfied.
My pain has made me far more sympathetic to others and I now stop strangers in my village who have a stick or show walking difficulties and ask about their welfare and give them a hug. My inability to sleep has driven me to take up night reading again, curled up with a torch like when a child. My inability to weed the garden has prompted my nine year old to leave his computer games and do the work for me. A friend, Howard, seeing me struggle with a box, picked it up for me, saying he needed the exercise to retain my macho dignity. My condition has made me accept my mortality and finally prompted me to stop smoking , both the green and the brown , thus potentially prolonging my life and my wife gets up early to make me infusions which taste not just of ginger and garlic but also of love.
What is right for one of us is not for the other. We all have our values and our fears. We must listen to them, gather as much quality and truthful information as possible and do what fits our little world and NEVER simply do something because others do. What maybe your meat is my poison and visa versa.
That's me done. My shoulders ache so no more sitting at the PC. Good, I'll take a walk on the terrace and see what birds are flyinf.
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