PMR - prednisolone - arthritis - other symptoms.

[Meriadoc]

With a variety of symptoms, including 'pins and needles' in my feet, leg and hip pain, general aches and pains ( on top of my existing asthma, levothyroxine treatment and Amlodopine for slightly raised blood pressure) I was diagnosed with PMR in summer 2023. Since then I've been told that the problem with my feet is not PMR related ( still waiting for appointment with neurologist October 2025) and have had no further advice, other than continue with prednisolone - increase the dose if pain returns. I now have other problems (ostopaenia/ bone thinning/ skin problems) related to steroid treatment, and still have pain in my leg and hip. So I got fed up with the prednisolone yo-yo. I just continued to gradually reduce the prednisolone. After about 6 weeks on 1mg, I still had aches and pains, but felt no worse. So I stopped completely. Generally I feel much better than I have for about 18 months, since PMR diagnosis, and have less worries about impact of long term steroid treatment. I will now try to get further advice about possible arthritis, without just getting the standard response of 'increase your prednisolone'. Not suggesting this will be the case for everyone - but don't get caught up in the 'it's PMR' trap!

[Fatsiajaponica]

Well that's interesting. I see that you were diagnosed originally 'over a 5 minute phone call' which may have been the start of the issue. I understand that there is a proportion of those diagnosed with PMR who do not have it. You seem to be doing so well. Here's hoping that your other aches and pains get sorted soon, especially the hip/leg issue. Best Wishes.

[PMRpro Ambassador]

I have to say - difficult with just an outline, but what you describe there wouldn't ring alarm bells for PMR for me!!

Hope it continues as it has started!

[Smithie49 in reply to PMRpro]

Hi PMRPro. I thought one of the diagnostic tests for PMR was (in most cases) the rapid response to pred. Do other conditions also respond to it so quickly?

[PMRpro Ambassador in reply to Smithie49]

It isn't really a diagnostic test - more a brick in the wall of evidence! Nothing else really responds as I and some others have done to pred, I took 15mg at 10.15am and at 4pm I had about 70% relief of symptoms, 95% of the stiffness was gone! Inflammatory arthritis responds quite well but tends to be slower or less dramatic and then later the tapering turns out to be harder. A study did make some comparisons which were quite interesting. But even "pure" PMR does not always respond in a few days - the dose needs to be enough (obvious when you think about how it all works) for that dramatic response and some people just need more. It also doesn't help if you decide to go back to normal activities as soon as you feel any better!!!

[Stills]

the first few lines of your post apply exactly to me too and I don’t have PMR but long term rheumatoid condition of AI nature. In my case I suspect PN and joint damage from my condition may cause this.

[Bedwell]

that’s so good to hear! Encouraging. I’m on 1mg about to start gradually reducing…0.5 on Sunday this week.. and following DL plan.

[Booklover57]

I think I too have similarities -a range of predominantly hip and thigh aches diagnosed in a five minute telephone conversation as PMR. This put a different complexion on my on-going head pains and visual disturbances so I was treated for GCA and started on 40mg prednisolone. After an initial improvement I became quite unwell. A neurologist suspected I didn’t have PMR or GCA but had “a non-specific generalised response” to the steroid and my difficulties stemmed from cervical and lumbar spondylitis. I came off steroids in four months while taking gabapentin. That was almost two years ago. I have some general aches and pains, and still take gabapentin, but I am so much better than I was. I have steroid-induced glaucoma and osteoporosis. Obviously this isn’t the norm for people on this excellent forum, but thought it was worth mentioning - if nothing else, beware of five minute telephone diagnoses, as there can be long consequences!

[PMRpro Ambassador in reply to Booklover57]

If you were only on pred for 4 months I think it is difficult to blame ALL the glaucoma and osteoporosis on it. They could possibly simply not have been diagnosed before.

[Booklover57 in reply to PMRpro]

Sorry Pro, I wasn’t clear. I was on 40 mg for four months, then four months tapering to zero, so about eight months altogether. You are quite right, I may well have had osteoporosis before and not known, although my eye pressures were within normal limits previously. Thanks for your reply and take care.

[PMRpro Ambassador in reply to Booklover57]

Have you actually got glaucoma? Pred does often cause raised pressures but you should be monitored and if that is treated with drops it doesn't necessarily progress to glaucoma which has another couple of symptoms in addition.

But to diagnose PMR without an examination AND then manage it incorrectly is very naughty. 40mg is a GCA dose, 15-20mg is a PMR level, and then to leave you at 40mg for so long without tapering is another no-no.

[waltztherapy]

Please do look out for replies from Dorset Lady, and PMRpro, who are more experienced and more informed than I. Most of us would be lost without their kind advice and guidance.