Are Mornings the worst for PMR?

[Leafsong66]

Hi again lovely forum members. My GCA seems under control in symptoms and inflammation markers. I am on a holding pattern now of 5 mg Prednisolone for the next 6 months. Had a pretty successful taper thanks to the DSNS method ( after a less successful attempt on the Rhuematologists gung-ho method which landed me in the ED).

What has just started in the last month is bursitis in my left shoulder and more concerningly awful morning stiffness in my wrists, ankles, large joints of feet and hands. Stiffness and pain in calf muscles. I take my Pred before my morning walk around 6:30 am with a dollop of full fat Greek yogurt.

the pain is improved with Ibuprofen and the is much better after the walk. The last bit is helped by a hot shower.

I remember that for the last 10 years or so I have had bouts of bursitis in my hips, stiffness in squatting down and osteoarthritis in my lumbar spine due to moderately severe scoliosis.

my Question is does this sound like PMR is developing now that I’m down on lower Pred. I regret not talking to the Rheumatologist about this at my appointment this week, but the acute stiffness had only been going two days prior and I hoped that it could have been blamed on the high humidity.

Thank you for your ideas. Have a wonderful Christmas Season.

[PMRpro Ambassador]

It could well be that the PMR needs a bit more pred to be well managed - but it is very unusual for ibuprofen to have any effect on PMR, not to mention it isn't ideal taken together with pred, as it can increase any gastric adverse effects. I had similar hand and foot symptoms that did eventually improve on pred but it took a few months at 15mg or thereabouts. Improvement with movement is supposedly typical of osteoarthritis - I don't know - but to me it sounds as if it might be a combo of both PMR and OA. The appearance and increase in the stiffness is definitely PMR-like.

[Leafsong66 in reply to PMRpro]

Thanks so much PMRpro. Do you think I should contact the Rheumatologist Clinic ( public system) and speak to the specialist nurse or wait and see?

[PMRpro Ambassador in reply to Leafsong66]

You could try - any chance at this stage before/over Christmas? Could you try a bit more pred - the flare protocol for example for a few days - and see if it makes a difference?

[Leafsong66 in reply to PMRpro]

That sounds like a plan!

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro on it being a combination of things… although some does sound a bit too uniform to be OA… perhaps Rheumatoid Arthritis should be considered? Any heat or swelling around joints?

[Leafsong66 in reply to DorsetLady]

Thanks DorsetLady. No heat or swelling around joints.

Last night I woke every hour as it was excruciating to move in bed. I took the Pred for the first time ever at 2:30 and after an hour or so got some more sleep. I woke up with the pain back to a more reasonable level. I am going to try the flare protocol.

[DorsetLady PMRGCAuk volunteer in reply to Leafsong66]

Ok, well try treating as a flare then -and hope it works for you…

It’s miserable when you cannot sleep 😠

[PMRpro Ambassador in reply to Leafsong66]

So the pain is in the earlier part of the night? Where exactly is it - is your spine bad?

[Leafsong66 in reply to PMRpro]

I’m aware of it after midnight or so. My lumbar spine is same old same old but it’s the pain in movement in most of my joints and both shoulders that is causing me to wake early.

I went up to 10 mg yesterday and will do that until the 27 ( the day our house guests leave after Christmas)

Do trust that you have a very healthy and happy Christmas time.

[PMRpro Ambassador in reply to Leafsong66]

A friend on one of the forums some years ago was dx'd as PMR but really struggled to reduced the pred and then she had tongue symptoms that can be seen in GCA, Her rheumy in Kent wouldn't have it and sent her to Dasgupta who said yes, it probably had been GCA but was now burnt out and it was pred for symptom control - except wouldn't let her have the dose that worked. In despair she went to see Sarah Mackie in Leeds who was also a bit baffled. But one day she happened to mention spinal pain at night was the worst and soon after midnight and eased when she got up. That isn't typical in PMR and Prof Mackie sent her for an MRI - which showed she had ankylosing spondylitis!

If you have a long history of spinal pain - maybe they should be checking that out as a possibility. Spondyloarthropathies can present initially just like PMR and ankylosing spondylitis can also cause GCA-type symptoms.

[Leafsong66 in reply to PMRpro]

Wow, another thing to consider. Thanks for your input.

[7Victoria]

Hi Leafsong,

From my experience with PMR and osteoarthritis, I would agree with the other replies that recommend going up to a higher dose as many of your symptoms seem to me to indicate a PMR flare. I know that’s so frustrating. I’ve been on prednisolone now for 10 years and annoyingly haven’t got back to 5mg for a very long time. At 7mg atm. Hope things improve for you.

I see from the conversations that you’ve increased your dose to 10mg. Hope that helps. Please stabilise before you recommence any slow taper.

Have a happy Christmas!

Ps I also live in Aus.

[Leafsong66 in reply to 7Victoria]

Thank you so much. I have horrible stiffness every middle of the night and am finding the 10 mg taken about 2:30 or so is a massive help. Am very disappointed that it does seem to be PMR ish, but I am at least in excellent company. Will get a professional opinion after the holidays but am so grateful all the wise and considered support. I’m sorry to hear that your journey has been so long.