Another question

[mariacwelland]

I have pain from PMR - is it wrong not to take steroids? In other words if I can manage the pain will I be doing my body harm by not taking steroids?

[Hidden]

Hi I am not any expert and at the end of the day no one can say it's wrong but...i understand that as an autoimmune condition your body is attacking itself and pmr can lead to more serious problems with the heart and some cancers.

I am "lucky" in the sense that the pain was so bad I had no problems accepting the medication. Pain is not my friend! I am sure you will get advice from people on both sides of the argument. Personally a fat hairy face and a hump were a small price to pay for less pain and less worry about heart and other issues.

[piglette]

Like Poopadoop, I could not have carried on without steroids. I could hardly walk, I could not dress myself and getting out of bed was virtually impossible. The pain was horrendous, even raising a fork to my mouth was agony. On taking steroids a miracle happened in less than 24 hours. I was back in the land of the living again.

[mariacwelland in reply to piglette]

From what everyone’s saying I think I might have Fibromyalgia as well as PMR. Great!!!!

Thanks for your kindness and trying to help

[PMRpro Ambassador]

The pain is being caused by unmanaged inflammation in your body. The presence of inflammation of any sort is felt by many experts to increase the risk of developing some forms of cancer and, more specifically in PMR/GCA, cardiovascular disease (disease of the blood vessels and heart).

Leaving PMR untreated and coping with the pain and stiffness is one thing if you feel you would rather take the risk of leaving the inflammation, but I think it is these authors

academic.oup.com/rheumatolo...

who say that leaving PMR untreated may result in it being more likely they progress to develop GCA. If you have GCA and then don't take pred at a much higher dose than in PMR you run the risk of irreversible loss of sight. So to me it makes sense to take the lower PMR doses and reduce that risk.

You also need to think about "How long?". I was not diagnosed with PMR for 5 years. I "managed" without pred but my level of disability was considerable and I had to give up a lot of things as well as being in pain pretty much 24/7. Then, finally, I was given pred - 6 hours after taking 15mg I was mobile again and the pain level had reduced dramatically. Over 8 years later I still have PMR, life without pred would be painful! With it I live a pretty normal life. Only about 5% of patients have such longterm PMR but the median duration of taking pred is still 6 years:

medpagetoday.com/rheumatolo...

with perhaps a quarter of patients being off pred in 2 years, and you only get off pred when the underlying cause of the symptoms we call PMR has burnt out and gone into remission. The people who are off it in under 2 years also seem to be at a higher risk of a relapse later.

So - do you REALLY fancy being in this much pain for the next 4 or 5 years (on average), especially given the attendant risks? And especially since if you have any bursitis that is likely to get worse over time. It isn't as simple as pred bad, no pred good.

[DorsetLady PMRGCAuk volunteer]

Hi,

It’s not wrong if you don’t want to take steroids, but I would suggest it’s unwise!

As I’ve said before I’m sure in days gone by many went through PMR and GCA without Pred, but I doubt if their quality of life was much to shout about.

Whilst the inflammation from PMR is left unchecked you cannot be sure what damage it may be doing to your body, plus of course there is always the possibility that left untreated you may develop GCA. And from personal experience I wouldn’t wish that to happen.

So please think long and hard before you ditch the Pred, but of course, it’s your decision. We can only offer advice.

[jwb43]

Sounds like a good question for your doctor. I want over I have been managing my pain for five years without prednisones. Some believe it may not be PMR for that reason. But it seems to fit all the criteria and yet painkillers help it. Do the painkillers actually help your pain? Because some say that you cannot get much relief from pain killers for PMR pain .

[mariacwelland in reply to jwb43]

No - painkillers don’t work so it has to be PMR, but I also think I’ve got fibromyalgia. I’ve booked an appointment at the doctors so hopefully he’ll sort me out. Thanks for your comments - the more info I have the better.

[Marijo1951]

I had undiagnosed PMR and GCA for 4 months. It was a daily grind of taking 20 minutes to get out of bed followed by 30 minutes to get dressed and stiffness, pain and exhaustion for the rest of the day, unable to use my oven or pick up anything from the floor, and having to ask my daughter to change my duvet cover. I felt that, terrible though the pain was, I'd put up with it if I could only lose the accompanying stiffness and loss of mobility. Reading this forum I realise that I was lucky - some people are undiagnosed for years. What I found out during that 4 months was that no painkillers, whether over the counter or prescribed, did anything for the pain and stiffness of PMR. When my rheumy gave me my first prescription for Prednisolone, she told me the pain would probably reduce within 24 hours. In fact a couple of hours after my first dose I felt the pain and stiffness start slipping away. I'm still chronically fatigued and weak, but by and large without pain and stiffness. I don't take medication lightly but I certainly wouldn't give up my pred which is actually helping to reduced the inflammation that causes PMR and GCA as mentioned by Dorset Lady and has so improved my quality of life .

[mariacwelland]

Thank you Marijo - I suppose it’s a no brainier! Thank you for your story - it’s helped me come to my senses!