Reducing pred and flares

[Ramsgate]

I was diagnosed with PMR in March 2020 just as lockdown started, having been in pain and struggling to walk for months, I had severe groin and buttock pain on my left side and was very weak. I have wear and tear on my left hip with osteopenia and after 3 blood tests my doctor decided I had PMR and I started on pred which was like a miracle! I managed to lower my dose to 2.25mg in April this year and then had a flare, unfortunately I did not increase my pred enough and then have had two more flares. I’m back up to 6mg and then 5mg every other day trying to cope but have the groin pain back and weakness in my shoulders, I’m so frustrated as I had done so well in tapering. Should I increase the dose again or stick to trying to get back to 2.5mg which seemed to be fine, it took me a year to get down from 3mg to 2.5mg. I might add that I’ve only had telephone consultations with my surgery and no referral to a rheumatologist. The doctor who diagnosed the PMR has moved on but she was really helpful and then lockdown hit and I’ve been left pretty much on my own, with help from this forum and the PMR local support group. Your advice is much appreciated!

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare -

healthunlocked.com/pmrgcauk...

However not sure what you describe is a flare -groin sounds as if it could be osteoarthritis or bursitis-and what do you mean by weakness in shoulders? You do need to re-engage with GP surgery.

You could try increasing to 10mg for a week and seeing if that makes a difference-then back to 6mg -and sit there for a while until you’ve sorted out exactly what your other issues are.

When you restart reducing only 0.5mg a time and a slow tapering plan.

[Ramsgate in reply to DorsetLady]

Thanks DorsetLady, I increased to 8mg for 3 weeks and then down to 5mg for four weeks and now have a flare which happens to me after 3 weeks or so on a lower dose, I was reducing by half a mg as I was on 3mg in October last year so I did reduce very slowly to 2.25mg, I will probably have to bite the bullet and contact my surgery!

[PMRpro Ambassador in reply to Ramsgate]

Do you mean that happens at any lowered dose or is there a specific dose it happens at?

[DorsetLady PMRGCAuk volunteer in reply to Ramsgate]

I think you probably need to if you are having trouble at 6mg.... and as I said it isn't always PMR ...

Would say that previously that 3mg was probably YOUR dose, but now you are having issues above that - it could be more than just PMR.

[PMRpro Ambassador in reply to DorsetLady]

Or a flare in disease activity with the PMR - happens quite a bit really

[SnazzyD]

Sounds like a long old slog for you! What dose were on where you last felt comfortable? Others will reply to about the dosing soon I’m sure.

My question is, about the osteopaenia sentence. Did you have a DEXA scan to show the osteopaenia and how was it stated that wear and tear was because of it and if so, how was that seen?

Also, you say that you didn’t walk for months before Pred did its thing, but what kind of rebuilding muscle weakness have you done if any? I don’t necessarily mean going to the gym, or have you been seen by a good physio to help undo the deconditioning and wonkiness that we develop after this kind of debility?

I’m just trying to look at the bigger picture because long term illness can set up non-PMR musculoskeletal issues and it’s worth bearing that in mind whilst considering whether PMR is up to something.

[Ramsgate in reply to SnazzyD]

Hi SnazzyD, I had a dexascan which showed -2.4 for my left hip and I was told it was osteopenia (no other information given) . Over the last 3 years I have been going to Pilates classes (Trigger Point Pilates) which works on the fascia, walking for at least an hour a day and attending two exercise classes a week for ‘active retired’ I must admit that I have been overdoing it for the last couple of months so maybe that is what has caused the flares (?)

[PMRpro Ambassador]

The reason you are having repeated flares is probably because you are hovering at a dose that is nearly enough to manage the daily dose of inflammation created each morning but there is a residual level of accumulated inflammation that needs clearing out.

If you are anything like me, there is some myofascial pain syndrome complicating the picture. The groin and buttock pain on the left side could well be greater trochanteric bursitis combined with some piriformis syndrome - and when that continues untreated it will cause stress on the rest of your back and eventually there will be other problems.

Osteopenia won't cause any wear and tear problems in and of itself - all it means is that your bone density is lower than it was on average at age 30. Or do you mean osteoarthritis? Different thing altogether.

I think you need f2f with the GP, some physio advice and possibly a local steroid injection which would reduce the need for more oral pred.

[Ramsgate in reply to PMRpro]

Thanks PMRpro, along with the other answers, I think I need to go to the GP and talk things through - as I said, I do a Trigger Point Pilates class twice a week which releases the fascia, hopefully that helps (?) I may have been my worst enemy here and totally overdone things over the last few months so I’ll tell myself to slow down and take my dose up for a few more weeks and then gradually get back down to a lower dose. I appreciate all the advice given - many thanks!