As I understand, prednisone lessens PMR pain by reducing inflammation and lowering your immune system. If a person was on prednisone, for say months, would the prednisone also mask non PMR body pains? If this is the case then wouldn't the ongoing non PMR body pains also start to reappear as a person tapers prednisone dosage? And could a person confuse these pains as part of flare symptoms?
Prednisone and non PMR body pain: As I understand... - PMRGCAuk
Prednisone and non PMR body pain
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dccarver
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DorsetLadyPMRGCAuk volunteer
Higher doses of Pred do mask other pains [and you don’t necessarily need to be on it for that long], and many of us have found [self included] that as we got to lower doses the pain connected to our pre existing issues [for me osteoarthritis] returned….
As Nextoneplease says it is some difficult to know what pain is what, but if improves with ordinary painkillers then it’s not PMR
Thank you. I hope this helps a lot of PMR people who are tapering prednisone decide whether the pain is PMR or old aches returning. If the later I am thinking one should keep tapering according to their schedule.
Provided it’s definitely not PMR then yes you should continue tapering schedule, and use other means to control pain.
Hi dccarver 😊
Yes, I think this often happens. Certainly it has for me, and like DL, I am now coping with pain from osteoarthritis, which would easy to confuse with a flare. The main difference in my case is that it does respond to a certain extent to paracetamol, codeine and ibuprofen, which PMR generally doesn’t. The pain is also mainly on one side, whereas PMR pain is more bilateral. But yes, it’s easy to confuse! Lots more posts with info on FAQs and related posts to the right of this page .
All the best xx
It happened with me too. I have had arthritis for a long time in my ankle from an old sporting injury, and it has caused constant discomfort for years. When I started with prednisolone in 2015, it miraculously disappeared, and it felt wonderful . Then, as I gradually reduced my dose, the pain reappeared, and there was no mistaking what it was! Good luck.
Thank you!
PMRproAmbassador
Yes, yes and yes, It is important to learn to know YOUR body, YOUR PMR and how YOU react to pred.
Steroids are used for around two hundred different illnesses, including asthma, chronic obstructive pulmonary disease (COPD), hay fever, hives, eczema, painful joints or muscles – such as arthritis, tennis elbow and frozen shoulder. Some require higher doses than others and some are just short term doses.
This is a question I’ve been asking too. I spent all of last year struggling with what my doctor thought were several PMR flares, bumping the prednisone dose back up and resuming the slow taper. What was disheartening was that my pain was never controlled. Finally at the end of last year the rheumatologist suggested that my PMR was fine and that my pain is more likely due to fibromyalgia, and has been for some time. I have mourned all that time returning to higher prednisone doses - if the fibromyalgia diagnosis had been made in January 2022 I would be off prednisone by now. Sigh!
Fibromyalgia is a whole new ball game though, and a life sentence. But at least I can look forward to being off steroids by the end of this year. And the other positive is that I now qualify to be seen at the hospital pain clinic which I hope will make a difference.
Has anyone else here had a similar experience?
You’ll probably get more replies if you ask the question re fibro/PMR a separate post. But yes there are some around…
thanks DL. I’ll do that because it really is a whole new ballgame.
If you write a post including fibromyalgia in the title as well as getting answers you'll see a number of related posts in the right hand side bar to go through when you click back on your post page.I've answered to many posts on it over the years , as I have Fibromyalgia, and had it before GCA.
It is a different kettle of fish and a lifelong illness , but it doesn't need to feel like a life sentence. Much like when you needed to get used to managing your PMR , you get used to what works for your Fibro , avoid your triggers or adapt what you do to prevent those triggers , and after some trial and error you find what medication, or combination of medications help you in your pain management.
You use similar Self Care rules for Pacing Yourself , Reducing Stress , Gentle Exercise ( as the tight exercise is actually part of your Pain Management) and good hydration, vitamin supplmentation and a balanced diet are key to improving your symptoms.
You are always aiming to be Pain Managed with Fibro not 100% Pain Free. Success is 85% Pain Managed most of the time while enjoying a good , well paced quality of life.
Fibromyalgia is also classified as a Disability in the UK so there may be some benefits that you are eligible for.
It is worth joining the HU Fibromyalgia UK forum as you can get the same understanding and support from the members there as you did here for PMR , they are also a caring and active group.
Keep Positive , Bee
Thank you Bee! I am just learning about all this and need to devote more time to it. Your comments are very helpful.
I’m in NZ so the available support is different. Just today I’ve managed to get an appointment with an in-clinic health improvement practitioner who will hopefully help with a management plan and open other doors.
Hi...this is to several posters ......
..I agree with the comments above
And with what PMRPRO said about knowing your body and pain (location, type, triggers) ...I would add fatigue state and fogginess. You won't reach perfection but it will help managing each condition.
I was diagnosed with fibro in 90's. My doctor put me on ultram (tramadol) and it kept me working for years. I now take the extended release ultram 300 mg. Over the years I tried the newer typical treatments and they did not work and I could not function....awful for me...but some folks get a good result. Regardless of what you end up taking....make sure you get something that works...don't give up until you do. I hear sometimes thete are no treatments and it's not true. I hope you find one that.helps you like ultram does me. My goal is pain management without side effects that make me tired or loopy. Fibro is complicated because it's about more than just pain. It affects the autonomic nervous system.
As I try to cement the pain differences between PMR and fibro, I also have OA, and RA. But for PMR has been the most debilitating and the pain presents in different places than the others for the most part. The fatigue is also much worse....
I also have never had full pain relief from the pred like others which is disheartening. I have been on a high dose for way too long and am paying for it. I am praying that soon I will get to try Actemra because my RA is active again so.hopefully it will happen soon and ai will have some success as others have and can reduce the pred. I.just pray all the side effects will resolve.
Considering I didn't get.as good as a response from the pred as others.I am still grateful for what it is doing. Cannot imagine what I would have done the past 9 months.
Anyway....good luck with pred dosing...good luck with learning about fibro and getting a treatment, and mapping pain diffetences.....
...one and all.
Be well!
Your experience with tramadol is so encouraging and thank you for your story. I agree it can be very difficult to distinguish between the various of pain. I understand that a good deal of the challenge in living with fibromyalgia is in finding the combination of therapies that work best. So far I haven’t found any medication that lessens the pain but feel reluctant to try the options that have awful side effects. So I’m placing a lot of hope in this pain clinic.
Good luck with your journey. I agree that the usual treatments' side effects are so bad it's hard to tell if they work. Anyway I hope you have answers soon. Take care.
Thank you!
Simple answer is "yes". I had OA for many, many years before I got PMR and so find it fairly straightforward to recognise which are which. The harder part though is being able recognise pains which might not be PMR but part of something new.
Quite ironic as I was just thinking was the discomfort/pain in my shoulders a flare (as doesn't seem same as it was at my worse with pmr) or just general pains that possibly caused by something else as simple as bad posture at a computer. I'm on 6mg Pred and don't want to go back up 'just on case'. So reading these replies has helped me decide to persevere a bit longer and realign myself at my desk 🤣
I had been suffering from severe back pain for about 10 years before I got PMR. Once I started treating the PMR with steroids it did not really help my back pain a whole lot but I was already taking strong painkillers for that. So as I reduced I could tell when a flare came up because I had pain in places that had nothing to do with my lower back. Most specifically when I had PMR my upper thighs would hurt. In fact I had a very short flare after having covid and I recognized it immediately. It only took a short course of prednisone to deal with that flare up and then my PMR was gone again. I'm hoping it's gone for good now..
It can get quite complicated you are right.Higher doses of Pred can "hide" or treat other causes if inflammatory pain , particularly things like Osteoarthritis and oestoporosis related pain .
Which is why when you get to doses below 10 mg if you have a flare of pain especially from activity it is worth trying other pain medications like paracetamol and either heat pads or short term coolness and rest , or a change in activity , for 24-48 hours to see if the pain responds .
If the pain is not helped by other means it is then worth contacting your GP to have your inflammatory markers checked to see if you require a short term dose increase of Pred , or if this isn't possible and the pain feels moderate to severe and classic in type for what you experienced with PMR then use sick Day rules without the tests.
It's why it's worth treating the whole body throughout the time you have PMR / GCA and take steroids not just relying on the medication mopping up the inflammation. Pacing your activity but also including some regular gentle and weight bearing exercise within your comfort zone is vital as is good diet and supplementation and good hydration , and relaxation and a good sleep routine.
You do this because your aim is to treat the PMR but also keep your body , bones and muscles in the best condition you can manage to achieve while you are dealing with PMR in order to improve your general health and treat your other conditions , particularly OA , RA or other bone and joint issues so that they don't get worse while the pain is hidden on steroids and then pop up and bite you in the bum when the doses are lower.
Another issue which complicates things further is Neurological Pain . This type of pain is rarely masked completely by Pred , even at higher doses , so quite often , a slow response to Pred or a dose increase , or a continuing numb or gnawing pain , itching pain , twitching or spasming pain after starting steroids can be a nerve pain condition which is being made worse , or being triggered , by the PMR or GCA , and it may require further investigation and it's own nerve pain medication to treat it.
Over time , many people find that they can suffer neuropathy or neuropathic conditions develop either because of the effect of PMR on the body in general or the long term use of steroids effecting nerve messages or the nerves and circulation and even sleep patterns. Many people whom suffered with Neuropathy prior to PMR may need to increase their medication or have something prescribed for it. Many people can find they either already had Fibromyalgia which has got worse , or the stress on the body that PMR, or other inflammatory conditions cause, trigger it's development.
Peripheral neuropathy and Small Fibre Neuropathy or nerve impingement all need their own treatments and sometimes an increase in steroids will make these feel worse , not better .Steroids rarely help nerve pain unless the inflammation is the cause if it by producing a nerve impingement.
So people need to become their own detectives , working out not just where the pain is , but what they did that may have triggered it , if it responds to Pred or Paracetamol, heat or cold, but also , most importantly, the character of the pain . Nerve pain needs its own medication and care , not only to help the Neuropathy itself , but also to prevent that pain triggering a flare of PMR , and vice versa, in a horrible vicious circle.
Wow!!! A lot to think about here. Well done!!!
Prednisone masked 2 major tooth infections and I lost 1 tooth, 1 implant and had a root canal. I have always had healthy teeth prior.
I'm on a very high dose of Pred. at the moment and tapering. I find that much of the PMR pain is re-emerging and also some of the "old" pains. The old pains are alleviated with a Ibuprofen 200 mg/Tylenol 500 mg combo. The PMR pains will resolve as the Pred 50 mg. starts to level off (hope springs eternal) and then on to the next taper just in time to get it all riled up again. Eventually will be down to where I started over a year ago at 20 mg. and then the regular tapering plan. That is my goal for now.
At those high doses of pred there shouldn't be any PMR pain - if there is, then they need to put their thinking caps on - it might not be PMR at all.
Agreed about the thinking caps. It does feel like the PMR pain though. Between shoulder blades, waking during the night with neck pain up into the back of my head, left shoulder doesn't want to reach back (i.e. to pull on clothing), backs of thighs, etc. If only one could hear back from the Rheumy; not even re bloodwork to check on glucose levels (so one assumes said bloodwork was "normal"), but then she has never given me a follow up call after bloodwork. 😣
This is the 4th day at 50 mg. I also think the high dose should take care of PMR pain. Sciatic pain, groin and hip pain are alleviated with the IB/Tylenol, but the Prednisone never did touch it, even at the former 14 mg. The pain is tolerable, but I always have this nagging suspicion that it shouldn't even be a thing. Thanks to this forum I'm understanding more about high Prednisone and the hypoglycemic effect, crashing with the fatigue, cutting out even more carbs, shakiness, weakness.
Oh yes - not saying it isn't PMR-type pain. HOWEVER - PMR isn't the real disease, it is the name given to a set of symptoms and there are several underlying causes that can cause them. Any time that PMR symptoms don't respond as expected to moderate dose pred it is quite possible that it isn't the PMR we talk about which typically is sorted by 25mg or lress of pred and using more than that is flying high. Inflammatory arthritides can present LOOKING like "our" PMR but they don't respond in the same way to pred. And there are other potential causes as well.
omg...it is overwhelming Pro to think of misdiagnosis at this stage...especially being stuck between a rock and a hard place as far as medical care goes.
It isn't so much MIS-diagnosis as the real cause being not obvious and there being no definitive tests. Several things can present as "just" PMR and only show their true colours later.
Follow up to PMRpro' suggestion about diagnosis. There's a good article with information about "differential diagnosis" part way down:
I'll say yes but it's a bit more complicated as I have found out the last few years.
I'd had an osteoarthritis diagnosis for more than 25 years before PMR diagnosis. It never really troubled me much, but I had a painful hip. A battery of x-rays showed my hips were about the only imaged body part which did NOT show any sign of arthritis, a bit of a relief because it was so bad I'd been thinking I needed to get in line for hip replacement. Scroll forward. Pred alleviated entirely ALL my body aches and pains. Some re-emerged as my dose tapered down to about 7 from initial 15 over about six or seven months.
Scroll forward again. Several years. I discovered my hip pain was probably bursitis (self-diagnosed through the internet) and found an exercise which would help. Within a few days hip, which by then had been a problem for over ten years off and on, was better, and many months later remains so.
In parallel with this I have had on again, off again problems with my neck, which is very arthritic and probably has been since I was quite young, and shoulders, probably referred pain. I thought that was OA but when I had over all pain which reminded me of early days of PMR and took an increased dose of pred the shoulders and neck resolved miraculously, although my increased dose wasn't anywhere near the initial PMR dose which had, I thought, dealt with OA also.
Today I believe a lot of the pain which I'd attributed to OA in the past was probably incipient PMR. Why do I think this? In about 2007 I was on holiday in a place where some entertainers pulled us all up out of our seats to make us do a sort of swooping dance. I found this painful and difficult, as I knew I would because that's how I was those days and had been for a while. Nowadays with PMR controlled by about 2 mg pred I would not have this difficulty, nor, as pointed out, have I ever had OA in my hips, which I didn't know then.
So much to consider Heron. Today is my birthday. I shall deal with it tomorrow. LOL. I will check out that link though. Thank you so much for all the pertinent and relevant info you provide - not just to me - but all of us.
Have a good day -or hope you had a good day 😳
As a person who is tapering (once again) below 7.5mg pred, I am anticipating the return of OA on both knees as a recent X-ray revealed moderate deterioration. I did start to feel the re-emergence of knee pain when I got down to 6.5 previously.
To muddy the waters, there’s also adrenal insufficiency below a certain dose and those symptoms can further make it difficult to determine a source/cause.
Knowing your body and it’s responses to flares, medications, DOMS, etc is key. Doesn’t inspire me to lower my dose 🤔 but I shall continue the tapering.
Great comments!!! Thank you all for taking the time to comment.
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