PMR flare? Reluctant to keep on highish doses of steroids.

[turquoiserainbow]

Diagnosed in Feb 2022 Started with pain right hip and slightly in ankle, before it became generalised and responded dramatically within 3-4 hours to 20 mg prednisolone. Since then I've managed to get down to 2mg which I was on for2-3 months. However about 2 weeks ago, I had to contact my GP because of real problems with my ankles - my left this time worse than my right. I upped the steroids to 10mg with mild effect really. Inflammatory markers ESR and CRP very normal. Today I felt compelled to go up to 20mg. I have been referred to rheumatology. I had been ok on 2mg until very recently. I did have one or two blips reducing the steroids and had to back up a couple of times but only to 5 once and 7 another.

As an aside I was diagnosed as having inversion problem of my right ankle as possibly a separate problem and was fitted with insoles. I recently gave this up as it seemed to be making things worse. An x-ray showed average osteoarthritis. In November I also broke my right pelvis cycling (on ice), which has fully recovered, but obviously my gait, as well as my cycling, were affected.

My questions are:

1) I'm very reluctant to have to keep on 20mg steroids for a long time, but equally well know the drawbacks of methotrexate. What have other people found and decided in similar circumstances?

2) I know PMR can affect anywhere, but with this flare I've not really it worse in the mornings. So am I getting it wrong especially with the blood markers being ok ( they were up at original diagnosis).

Thanks for reading and I'd be grateful for any thoughts. I should add I'm male, 72 and consider my self otherwise quite fit - but then again maybe I'm dreaming!

[DorsetLady PMRGCAuk volunteer]

Would say your issues are caused by something other than PMR

You really shouldn’t need longer than 2weeks at 10mg(which is more than we would have normally advised ) to get a flare back under control,

Agree you don’t want to stay on 20mg -so maybe give it another 5 days to see if there is any improvement and then suggest you drop back to 10mg.

If no better by then maybe try painkillers to see if they help -whilst waiting for rheumatologist appointment

[turquoiserainbow in reply to DorsetLady]

Thank you.

[PMRpro Ambassador]

I really don't think your ankle problems are due to PMR and on that basis - you don't need 20mg of pred and certainly don't if it doesn't make a major difference in a day or two,

Have you tried painkillers? At 2mg, taken with food and possibly a short-term stomach protector you should be OK with NSAIDs to see.

Even correctly fitted insoles may well feel they are making a problem worse at first since they change the way you stand and walk - so if you just put them in your shoes and wore them all day, you would feel it badly. You should get used to wearing them gradually, bit like tapering pred or introducing exercise, an hour a day the first few days and then a bit longer every few days until you can wear them all day without feeling it afterwards. Were you not told that when orthotics provided them?

[turquoiserainbow in reply to PMRpro]

Thank you.

[SnazzyD]

When you got your insoles did you wear them a lot straight off? I did and found my body resented being told to straighten up as it was accustomed to being slightly wonky. It took time for muscles and joints that had been made to work incorrectly to change to the correction. I thought the podiatrist was being alarmist.

I don’t know what is going on with you but don’t underestimate boring general decline. I found being physically run down and on Pred (GCA only) certainly brought the chickens home to roost of all my injuries and old issues over the years. I aged suddenly. A previously minor gait issue caused pain in my pelvic area, ankles and Achilles and early arthritis in a foot. I thought I felt ok but a podiatrist and a physio identified independently the same weakness areas. An old dog bite has caused arthritis too, the list goes on. If I have a fever now, it feels like I light up like a Christmas tree, a light for every ‘war wound’.

Now I have to use insoles and keep on top of specific exercises for strength and flexibility. Now I know that ticking along wasn’t that, it was a slow, invisible slippery slope and I took being pain free as being a signal that I was ok, until I wasn’t.

[turquoiserainbow in reply to SnazzyD]

Agree!

[AtopicGuy]

Many people have two forms of arthritis at the same time: rheumatoid arthritis and osteoarthritis. Steroids sometimes provide relief from both, but osteoarthritis often requires alternative medication. In those cases, increasing the dose of prednisolone won't help.

[turquoiserainbow in reply to AtopicGuy]

Thank. you.

[Preposterous in reply to turquoiserainbow]

I don’t know if this will be at all relevant or helpful but 2 years ago (well before any indication of PMR occurred) I developed a very painful right knee (hard to walk, unable to drive etc) and to cut a long story short the only thing that sorted it out was going to a pilates teacher and having weekly 1-to-1 sessions with her. It turned out my right leg was doing more work than the left and I needed to learn to rebalance myself. It made a difference after only a few weeks. I did have the knee X-rayed and it showed some osteoarthritis, but it really doesn’t bother me now. So I really recommend Pilates

[turquoiserainbow in reply to Preposterous]

Thanks. I've thought of pilates as it helped a friend with a back problem.

[Hopeful424]

I can't seem to get below 3.5-4 mgs daily. At 3 mgs, pain returns significantly. I have been on pred since April of 22. Would like to get off it due to side effects , but could not take hydroxi nor methotrexate.

I have a good bit of pain in my sternum, and it hurts when I sneeze. Does anyone else experience pain here?

[PMRpro Ambassador in reply to Hopeful424]

Again, if you want others to answer, you need to post your questions as a new thread for everyone to see.

You aren't heading relentlessly to zero, you are looking for the lowest effective dose and that sounds to be 4mg for you at present, and actually, to be at that after barely 2 years is pretty good compared with many patients.

We know patients want off pred because of side effects but really many can be managed or even avoided when you know how - what is bothering you most, someone can probably make some suggestions if you tell us.

Pain in the sternum can be costochondritis, inflammation of the cartilage joints between ribs and the sternum:

mountsinai.org/health-libra...

my.clevelandclinic.org/heal...

[Hopeful424 in reply to PMRpro]

Thank you PMRpro. I will discuss that with my rheumatologist. I don't know how to post as a new thread. Sorry!

[PMRpro Ambassador in reply to Hopeful424]

I've explained over on the other thread. It is quite simple when you know how!

[DorsetLady PMRGCAuk volunteer in reply to Hopeful424]

see this - in FAQs

healthunlocked.com/pmrgcauk...