in 2019 I was diagnosed with fibromyalgia, in 2023 following a dexa I was diagnosed with osteoporosis. Today a rheumatologist told me despite negative blood tests he was pretty certain I have PMR and after further blood tests wants me to start taking prednisone.
I chose not to take meds for the osteoporosis and I really don’t want to take steroids as my osteoporosis will almost certainly get worse and my blood pressure is already too high.
Has anyone else chosen to put up with the pain rather than take the steroids.?
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I am curiuos. I thought the amount of pred we are given to treat PMR was too low to treat GCA and that those who are on pred for PMR can go on to get GCA. Isn't it a similar and parallel thing?
The usual amounts of Pred given for PMR are too low to control GCA.
In this link, it is suggested that 20mg can be used as a starting dose for GCA, although the majority of patients start on doses between 40-60mg.
So I suppose a dose as low as 15mg may give minimal relief of symptoms at the very beginning even for GCA (both can be quite similar, fatigue, aching, fever, sweating etc) ... but it would not be enough long term, and the GCA would still develop over time - which is maybe why some people diagnosed at outset with PMR do not realise they have GCA as well until they reach lower levels, or when the telltale symptoms of headaches etc appear.
Obviously if you aren't taking any Pred at all, then GCA is likely to manifest itself much earlier. Whilst it is possible, although not advisable in my mind, to get through PMR without Pred.. as someone who got a very late diagnosis [not through lack of GP appointments] I wouldn't recommend anyone trying the same with GCA.
Really depends on your bone health, you history and your preference.
Many manage on VitD/Calcium and diet very successfully... I took it for 4 years with no problems whatsoever, but I was on high GCA doses, had a hysterectomy aged 37 and mother who had broken her hip - so pretty much stacked as being susceptible to osteoporosis.
Fortunately last DEXA scan a few years after Pred was fine... and as I've had 3 joint replacements due to osteoarthritis - and nothing crumbled during the surgery I guess me bone strength is fine!
So my view is, if you need it, take it, if you don't need it, then why add in another drug.
At the time I was prescribed prednisolone I could not get out of bed, stand up after sitting or sit in the car for any length of time. There was no way I could have put up with the pain and stiffness, Prednisolone gave me my life back and nearly 6 years on still does.
As well as the worries about GCA, as already mentioned, if you leave it the chances are that the pain and inflammation will get worse and you will need even more Prednisolone to get it under control and managed. You may be able to help your other worries and mitigate them through a change in lifestyle, diet and appropriate medication as other forum users have done.
Edit
Just to add, which I should have done at the beginning, the list of possible side effects of taking Pred is long and worrying, however it is a list of "possible" side effects. You may suffer from some of them, very unlikely to suffer from all of them and equally may suffer from only one or two or none of them. Many of the side effects can be mitigated by changes to lifestyle and diet. From being carried into hospital Pred gave me a normal life back with no discernable side effects.
a few months of untreated (undiagnosed) PMR left me paralysed in the mornings...a few weeks after treatment began I got GCA and was then on enormous doses (with many side effects). Pred gave me llife back...although in a somewhat modfied form...
You may prefer pain to steroids - but I am baffled to be honest! I didn't have the choice - I wasn't diagnosed: low markers and only 51 when it started to manifest over a period of months before an overnight meltdown that made it almost impossible to move.
It isn't as simple as pred bad, no pred good. Immobility with unmanaged PMR can lead to osteoporosis - and 15 years of pred for PMR barely changed my bone density. I was disable and housebound without my car when I was stopped from driving for another reason by a doctor - incorrectly according to DVLA as it turned out.
PMR can be managed with a low dose - not treating it may increase the risk of developing GCA and then your choice is very high dose pred or risk losing your sight, totally and irreversibly.
Some get off pred in a few years - but some don't and it seems more likely that PMR lasts longer when not diagnosed in a timely manner or is poorly managed. 20 years of PMR symptoms for me ...
Due to a poorly managed taper, I was off prednisone just prior to the start of covid, and my rheumatologist and I chose not to go back on prednisone to avoid having a lowered immune response due to the prednisone when the covid epidemic was just taking off. I stayed off prednisone for almost the next three years, and my pain and stiffness over that period steadily increased until I decided to go back to a rheumatologist for relief. The appointment I was given was three months in the future, so I decided to try a carnivore diet in the meantime. I fully expected to be put back on prednisone for PMR, but switching to the carnivore diet gave me complete relief from my PMR symptoms by the time of my appointment. For that reason, I never did get put back on prednisone. I am, however, currently being treated by the rheumatologist with methotrexate for other conditions (RA, PSA, and Sjogrens) based on my blood markers.
Without steroids I would have spent four years disabled and house bound. PMR affected the whole of my body. Horrible as they are, for me they were a miracle
somoeone in the Exeter local group has so far said no to steroids. She is trying all sorts. She has found EFT very helpful, but is very committed . Her daughter runs the group. I’ll get her to read these messages, as they are quite startling. Many thanks.
After many short periods on steroids for lung issues & 2 stone of extra weight (not all steroids, I was unable to do any exercise), I swore I would never touch steroids ever again. The side effects I get each time are very bad indeed, & I only took them when the option was steroids or hospital!! It’s not right to take up a hospital bed when there is medication which can help. But after being diagnosed with PMR, two things changed my attitude. Firstly, we are lucky to have a drug which helps this illness, many of the diseases I have have little help, & I’m in constant pain, despite steroids,tranadol & pain patches. Secondly, I have a disease called Macular Degeneration, which can lead to sight loss. My father went blind from it & I helped him through those years. There is a risk of GCA, which is a ‘sister’ to PMR, if you don’t take steroids, & others on this site have lost their sight, some in one eye. My sight is very important to me, & taking steroids is now, too! I’m suffering from Polymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Osteo Arthritis, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration & Plantar Fasciitis. I also think we should be responsible and take ‘ownership’ of what we have wrong & do what we can to put it right, & not become a burden on the health service, in Uk it is groaning badly. So, yes, I have the pain, & the steroids. But PMR doesn’t mean steroids for life, &, if you have fibro, then you prob have some pain from that. I’m down to 2 mg a day now, & many come off steroids altogether (which I hope to do, too)!
I hope this note finds you well. I wanted to share with you a decision I made last January regarding my health. After witnessing my sister's struggle with a brain tumor and long term Crohn's disease, exacerbated by years of steroid use, I made the difficult choice to discontinue taking Prednisolone. Seeing the toll it took on her body, both physically and emotionally, made me reconsider the potential risks and adverse effects of such medication.At the time, I was on a regimen of 5 mg, but after three years, I felt it was necessary to explore other options. Unfortunately, twelve months later, I received the diagnosis of vasculitis LLV. While it's impossible to say definitively whether continuing with Prednisolone would have prevented this, I can't help but wonder if it played a role.I wanted to share this with you because I know how important it is to make informed decisions about our health and the medications we put into our bodies. It's a deeply personal choice, and one that I grappled with extensively. I believe in the importance of advocating for ourselves and seeking alternative treatments when necessary. I have just been offered Actemra (tocilizumab) with MTX so hopefully no more prednisone, but I’m still anxious about taking this new medication.
Warm regards,
P.S. sorry if this is long winded, it’s also my 1st contribution to this site,
Hi there, I was really interested to read your post as I, too, have taken the decision not to go down the steroid route. As you can probably see from my profile, I started to be symptomatic back in 2021 but was undiagnosed until late 2022. I am Type 2 diabetic and have struggled with my weight all my life, so the side effects of Pred would most likely be very detrimental to my existing conditions. I do understand that most people here on this forum are very much "pro-Pred" and that I am in the minority and I do understand the risks involved in not treating the PMR. That said, I have also met people in our local support group who regret the day they ever started with the steroids as they now have other significant issues (Pred and/or tapering related).
I have recently been lucky enough to start on a course of semaglutide for my diabetes, which aims to reduce blood sugar and encourages weight loss and I'm really pleased to say that 1.5 stones down since January and a programme of healthier eating and a little more exercise (as much as I can bear) has massively improved the positive mental attitude, which can only be a good thing. Onwards and upwards!
Apologies for the long post! In answer to your question, "to take steroids or put up with the pain?" - as it stands at the moment, I choose not to take them and manage without, but I think this is a very personal choice - a decision to be made based on as much research and reading up that you can do, but also very much dependent on your own body and other issues that you may have.
I wish you all the very best with whatever choice you make that's right for you 😊
I wonder what sort of pain you’re experiencing. Before diagnosis I was having to sleep sitting up, as even then it was taking me 20 minutes just to get out of bed. Prednisone gave me back my life.
Also re the osteoporosis drugs, I too avoided them for many years, instead doing other things to reduce the loss of bone density. I managed to hold my own for a long time, until after getting pmr & pre diagnosis, when my bone density sudden dipped. At this point I elected to go onto AA, as I didn’t want to end up like my mother bent over $ in constant pain from it. I also saw a friend last week who didn’t take the drugs, & is now in a similar position .
Osteoporosis isn't painful - it is fractures that cause pain. I am often bent over with a lot of pain, especially in the morning, but it isn't due to loss of bone density or fractures, it is almost entirely muscular.
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