Are there any posts/stories here on recovery from PMR without steroids? I am about to be officially diagnosed with PMR, knew I had for the last 7 months, but just tried to live with it. I’m about to turn 58, female, my mom and my aunt had PMR in their 50’s. I would like to try and heal and get through it without steroids. I feel like it’s currently mild to moderate most days. I have no hip involvement, just neck, shoulders and the vague rib pain like costochondroitis. Morning stiffness and then mild pain during the day. I’m working full time and a part time job and managing my life. I don’t talk about my pain to my family, I just smile and move along. My mom dealt with PMR by becoming a bad alcoholic, my aunt took steroids and became a constant “patient” with health issues to this day. Can you do this without steroids? I’ve changed mentally, I’m not as much of an optimist as I used to be, but not depressed, just angry. After reading here, I see I’m lucky and need to lose the anger.
Stephanie
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SLCR
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I lived with PMR for 5 years with no steroids - it didn't go away in that time and I became increasingly disabled and unable to do things. 15mg pred gave me my life back.
If you look at the Related posts here there are other threads discussing it.
I had 5 years of PMR and no pred - and have had 12+ years of PMR and pred at a dose high enough to manage my symptoms well. I suppose it all depends on how much pain you have and are willing to put up with and how long YOUR PMR lasts - I can assure you it is more than 2 years for the majority of us. But it isn't as simple as pred bad, no pred good: untreated PMR is more likely to progress to GCA and then the choice is pred at high doses or risk going blind. And that is irreversible. It also seems that PMR left undiagnosed for a long time is much harder to get under control when you do get to use pred. I'm not alone in experiencing that. The pred probably won't make any difference to when the underlying a/i disorder that causes the symptoms will burn out - and that could be an extended story.
You may well be able to, some certainly can, and have in the past... but really it depends on your quality of life during the time it lasts, and nobody can tell you that for sure. Could be 2 years, 4 years or longer..
However you must remember that if the inflammation caused by your underlying illness is allowed to run rampant it could be causing internal damage to your body.
Plus it could lead to GCA, and if left untreated (as I know by not being diagnosed in time) can lead to partial (in my case) or or complete blindness.
The fact that you have changed mentally may already be telling you need to take some medication, and you do not need to become a constant steroid user if monitored correctly by your medical team.
I woke up early this morning after a really good night with minimal pain and only minor stiffness and I had a glimpse of who I used to be “in my head”, I think I miss the old happy go lucky me….I appreciate your response. I’m seeing my doctor on Monday and will make a decision. Thanks again!
Hello, I was 54 when I was diagnosed with GCA and I lost my career as a result of both the necessary high Pred doses and having an autoimmune condition. I do get that intense frustration of the unfairness of long term illness but one does have to make peace with it or else suffer the misery of the angst forever. Trying to forge ahead in order to ‘beat it’ usually ends negatively and as DL said, the fact that it is affecting you mentally is quite indicative. One relative dealt with it in a destructive way that caused damage and the other had a bad experience with Pred. You need not go down either of those routes, it isn’t inevitable. It would be interesting to know how well your aunt on Pred was managed by the doctor and whether she had the support of a group like this. I think you know that carrying on like you are is not sustainable because if one ignores a body that is sending you memos of distress all day, it tends to take things into its own hands. Keeping it from the family is rarely a good strategy and I would suggest asking yourself why you feel you need to. I suspect that if you have a crisis with this and it all comes out, if they care they would feel bad that they were inadvertently helping you to get there. My life was not sustainable and I ignored signs, explaining them away or seeing a brief respite as a green light to assume whatever that problem was, was over. The risk of GCA is worth taking moderate to low doses of Pred for, because high doses are in a different league for making life difficult. In the end it’s usually better to take the medium road, treat properly, keep everyone in the loop and make adjustments so that you can keep most of your lifestyle intact.
You could also have a trial of Pred so that you don’t feel like you’re signing on the dotted line straight away.
There have been a few stories of people having to cope with PMR without steroids , but to be frank , it was not through choice, it was because they were intolerant to the drug or had other medical issues that meant taking steroids was not an option for them. The experience was not one that they would wish on anyone. The drug choices available to these patients were not as efficient with dealing with the pain and inflammation , and their quality of life suffered a lot from it.
Not having the steroid working hard in the background to control the inflammation while PMR was still active in the body meant that they were usually in some level of pain and it meant that there were many activities that they could no longer do because of it.
This was also not a temporary thing. PMR is a condition that can alter your Life for years , even when you are taking the steroids to control it. This recovery also takes longer because of the effect of uncontrolled inflammation on the progress of the illness.
Even if you are a person with a mild case and no other existing health issues, if you do not take the steroid, your condition will take longer to recover from as the drug itself speeds up the recovery .
There may be side effects , and none of us usually want to take strong medications like Steroids as a life choice , but in chronic conditions like PMR , the benefits outweigh the risks .
You need to be honest about what you have and be willing to change long held principles if you want some level of Normal Life , even if you will need to live a New Normal .
I've known of some people whom adamantly refused steroids for some time with PMR or other conditions , in the end they took them because they could no longer deal with the pain and loss of life quality. More often than not , they had a harder and longer recovery after beginning the steroids because the condition had not been treated quickly in the early stages and it's effect on their body and mobility had become more severe. They also had to take higher starting doses for longer and had more relapses when their steroid doses had to be increased because things were not treated earlier.
I had GCA and PMR. I have other medical conditions that meant at times I had to go through a horrible rocky rapid slide up and down in doses to balance treating both conditions. I can tell you from experience , life was so much harder and I could do so little when trying to cope with the Pain of GCA/PMR without some steroid support , that Pain not being controlled at the same time as dealing with other health issues was like Medieval Torture.
My medical conditions meant I eventually had to come off steroids entirely last year but luckily my GCA/PMR had gone into remission by that point. That's another reason that I was glad I took the steroid treatment as soon as it was given and for as long as I could. If I hadn't the GCA and PMR would not have been at the point of remission , the steroids helped the time the illnesses were active in my system.
I'm glad I could take steroids as long as I could , it meant I am in a better position now dealing with my other health issues , but also that I could still have a better quality of life while suffering with GCA/PMR.
I hope that this reply helps you get a real life understanding of what it is to have what you have got , and it will help you understand what would be the best choice for you.
I certainly had PMR fourteen months before diagnosis, and possibly longer. I googled my symptoms and came up with PMR, which I immediately rejected when I saw it was treated with steroids. Surely, I thought, I can't have anything that serious! I can tell you, by the time, several months later, I received a diagnosis I went to the pharmacy on my way home, filled the prescription, and could hardly wait to get home to take the first dose.
Yes, I had lived a healthy life. Exercised, ate well, had a nice job and a lovely family. Got PMR anyway. It steadily worsened until I was virtually crippled.
Steroids? Felt slightly better within six hours. By the morning of the third day I had no more pain of any kind. I tapered from 15 mg to 3 mg within the first year. However I have stayed on prednisone, albeit at a very low dose (no side effects) except for a recent flare, for several years since then. I would never go back to the way I was before.
Hi SLCR, I’m 53 and was diagnosed with PMR in June 21. A PET-CT scan confirmed this. I tried steroids for 4 months but couldn’t tolerate them so my rheumatologist took me off them in October. I’m studying towards a MSc in nutrition so I had to put my knowledge into action. I now have just mild pain in my ribs. In June- December I was pretty much in pain everywhere. My rheumatologist is really happy with my physical state in terms of pain and blood markers. I’m not on any medication at present but he will prescribe methotextrate if my pain/blood markers increase. My blood markers are all normal.
In terms of my diet and lifestyle I’ve put a lot into place. I eat largely an anti inflammatory diet, I drink little alcohol except red wine. I get a good sleep (lack of sleep increases my pain). I gently exercise (that’s a balancing act as I can’t do too much or too little!). I take a range of supplements to reduce and mange the inflammation. I do daily breathwork (also to reduce inflammation) and have electric blankets all over the house! And I’m just completing a course of acupuncture. I saw a medical practitioner yesterday who I hasn’t seen for 2 months. She commented on how much improvement she’s seen.
I think it’s important to note that PMR has a range of root causes. One being genetics. You seem to have a genetic link. I don’t have that. Everyone’s body is different and responds differently to the environment. This is just my story and I had no choice but to go down this road as I can’t take steroids.
At the moment, I’m feeling very energised. Im back studying (had to take a break due to PMR), I’m back at work and I can see friends etc. I am cycling - something I had to give up, swimming and can walk for over an hour now. The brain fog has gone.
So that’s my story. I hope that you can manage the pain and the inflammatory markers don’t go too high.
Hello there, may I ask what exactly it was from all your scans and tests that made them think you had PMR and not fibromyalgia? I tried reading back through your posts but couldn’t see what it was that swayed them?
I had a pet ct scan plus numerous other mri scans. The rheumatologist and whichever specialist dr at the Cromwell hospital who performed the pet scan said my inflammation was indicative of PMR. Other scans ruled out other conditions like spondyloarthritis.
I felt like I was 100 years old before diagnosis. Hobbling about like a cripple, behaving like one of those old people I always complained about when I got stuck behind them on a busy shopping street. I had always done everything in a rush. Now, everyone had to wait for me to get into or out of the car, get out of a chair, or catch up with them on a shopping trip. After 2 days on pred I felt like I was 21 again. Not just better than before PMR, but better than I'd felt in years. All those little niggles that I'd got accustomed to because I'd had them for years, such as a stiff neck, back ache if I bent too much, painful knees and discomfort in bed, have all gone. To me, it was well worth it, and the side effects (40mg pred due to GCA by the time I was diagnosed) are so far, minimal. I am tapering and currently on 17.5mg so have yet to experience withdrawal, but for me, the benefits far outweigh the risks. I have been told that the chronic inflammation has damaged my hip joint and to a lesser extent, my knees. I would recommend you try pred. A short course should give you an insight into the benefits, and as I understand it, you can stop without tapering if it's only for a week or two, if that's what you decide to do. (Please correct me if I'm wrong on this admin).
I go back to my doctor on Monday, my 58th birthday. I decided to take that day off work, go see my doctor early and take the prescription for steroids and go celebrate my “new life”. Seven full months of this is enough. I’ve tried to just “be tough” and get through it, but it’s just draining me mentally and physically. I’ve got a good life and good health and much to be thankful for, so I’m going to tackle a steroid like I’m going to battle. I do intermittent fasting and I have for 5 years, sometimes I think that’s why I seem to have a more mild case of PMR, but who knows. I just need to figure out if I can take steroid on an empty stomach or wait until noon to take it with my first meal of the day. I can’t tell you how much I appreciate all the responses I got to my post. It made me really think and it helped me rethink this whole journey I’m on. Thanks again! I’ll update my profile and post more once I get started next week. Stephanie
Provided you take pred at the same time every day there should be no issues with your timing. Early in the day with breakfast is recommended because for people who are not on long term pred this apparently helps preserve adrenal's ability to produce cortisol, but for those on long term pred this becomes suppressed anyway. I used to take pred with breakfast. About six months ago I switched to middle of the night (with a small snack), and with some variations as to exact timing have taken it at that time since then. Recently a morning cortisol test showed that I have normal cortisol production even after over six years on low dose pred. (Luck of the draw I suppose.)
The important thing is to take your pred with food.
Late to respond but hope to send a note of encouragement. I was 55 when diagnosed with PMR in May 2020. Had been active and healthy until PMR decided to rear it’s ugly head. Then I was shuffling around like a very old and infirm person with short arms! Couldn’t function for half the day. Taking the steroids wasn’t an option if I wanted to have a life. It has been almost two years and I don’t even want to know how many milligrams of pred ( don’t want to add that up!). In the beginning I was adamant that I would taper super fast and be done. Well I have learned to respect the PMR and be thankful for the “devil’s TicTacs” as some have called pred. I am down to 4 mg and taking it ever so slowly now.
I didn’t gain weight or have any horrible side effects after the initial adjustment period. We shall see if bone density loss is a problem in the future. For now I refused the drugs to treat what might be a problem in the future.
Got a Peloton bike for Christmas and am a happy beginner on the rides. Am able to do Yoga and Pilates and be active and pain free!!
Thank you so much for your story. I’ve worked so hard to be a healthy 57 year old, the thought of steroids just terrified me. Weight gain being top on my list! I’m going to make a careful plan for my diet and exercise and hope for the best. I used to be an early morning jogger, so maybe I can get that back. I’m hopeful and feeling better since I posted and read all the responses. Stephanie
I used to jog 5 miles a day. I have a 1 mile course all ready for next week and I don’t care if it takes me an hour or a combination of walking, jogging and crawling!
It isn't what happens at the time - it is the pay-back next day with DOMS. Your muscles are compromised and the microtears that are what forms the training effect don't heal as they normally would, it takes longer. If you do too much, it can actually make the PMR worse and set you back weeks. Pred doesn't remove the pain of DOMS and if you train with pain - you may never get out of pain.
Your choice of course - but do listen to the voices of experience.
I’ll just walk for a while, or I might ask my doctor to make a referral to Physical Therapy for a while. I’ve always been very active and honestly I’ve been fairly active during this past 7 months with pain, so I’m kind of lost. I have a great doctor so I’m thinking she will let me have PT if my insurance will is another story. Thank you!!! Stephanie
Not sure PT helps a lot - unless you have a REALLY good therapist who knows ALL about PMR. Most don't. Repetitive exercises as usually used in PT are poison in PMR. Stretches and manual mobilisation of trigger points are useful.
Initially walking is as good as anything - and it WILL improve and then you can get more adventurous. Skinnyjonny swears the hydrotherapy he had at the start was key, Unfortunately it can be difficult to access for many,
I would definitely agree with the advice about not doing too much! The pred makes all the non PMR minor aches and pains retreat and you feel like you want to do a lot! As experience is always my best teacher I had to learn the hard way and ended up tired and sore ( not in a good way) a few times!Where in the US do you live?
Hi SLCR, I was diagnosed with PMR in October 2021. My shoulder and upper arm pain was debilitating, and I could not lift my arms at all. My CRP was high and my rheumatologist prescribed 10mg of prednisone (a lower dose than usual, he said, because I take methotrexate, also an immunosuppressant, for RA). My pain went away within a week, and my CRP is normal. I am now down to 8mg. of prednisone, and will go to 7mg next week. When my rheumatologist said to taper, I asked what happens if I have pain, and his response was “You will have pain, as the prednisone masks pain of other conditions, like RA and osteoarthritis.” I asked whether there was any harm in just forging on, despite any pain, and he said No. I may have had some “niggles” of pain, but they went away. At the beginning, I dealt with the pain with ice and compression sleeves. Both were helpful. Heat and massage intensified the pain. Good luck!
Interesting!!! Thank you! I remember once in my early 40’s, my doctor prescribed some steroids for bronchitis or something. I remember thinking that my body felt 16 again, things that I didn’t even realize were hurting in my 40’s had just disappeared for a little while. It made me smile to remember that! Stephanie
I had the same experiences. When I first got RA (after getting salmonella poisoning from almonds), I could not walk, as my knees were so inflamed and swollen. My RA factor was 800 (normal is less than 14). My doctor (who happened to be a rheumatologist) prescribed prednisone for a couple of weeks. It was a miracle; I could walk! He said they used to prescribe prednisone for long-term treatment for RA, but because of side effects, the usual treatment became methotrexate, and now biologics. I have been a healthy person, so the RA was a shock, especially since the raw almonds were a part of my healthy diet. The RA is totally controlled, so now the PMR was a shock. Might have come on because of covid exposure or high stress (husband with covid). I really wish you the best!
I have to say, PMR should be illegal for anybody with RA, that one boggles my mind!! It’s coming to this group and reading stories that has made me stop and rethink any feelings of anger or pity for myself. Stephanie
You might enjoy this. I wrote it a long time ago and life has moved on, but it certainly reflected my ambivalence at the time. I've become a bit more accepting and grateful in the ensuing years!
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