Hi, I was diagnosed with PMR in May 2019. Started with 15 mgs. I’d managed to get down to 4 mgs when Covid struck in 2021 and was advised to go up to 10mg but I thought I had to come back slowly and and so, with a total of 3 covids, 5 vaccinations and one stroke in August 2022 I find myself with 6mgs but I’m not able to be as active as I’d like. I started having upper arm pain 4 weeks ago in the night and thigh and buttock pain when I’ve walked more than 3000 steps. I love my tennis and walking so would like your advice please. I’m thinking of going up to 12mg for a week then back to 7 when I was good. I’m going to Sicily on Tuesday when I will have to walk a lot during the airport and sight seeing. Obviously my adrenals are not going to work again but I’d like to get down to 5mg eventually.
Thank you for your wonderful help
Ellie
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I think that is a good idea to cover your holiday BUT, do request airport assistance for the journey, most large airports you can request it at check-in but you can also request it in advance via your travel agent, It helps so much if there is a sudden change of gate, long queues at security and passport control as you bypass them when accompanied by staff.
Do be careful sight-seeing. If you can't manage something at home, you won't suddenly be able to manage it just because you are on holiday. The temperatures in Sicily next week range from low 30s and uninterrupted sun (so a perceived 40C in the afternoons) to upper 20s and sun. It will be hot in the shade, it will be far hotter in the sun. Today the temperature is 32C in the shade, feeling like 37C as it is humid. That is very unpleasantly hot just sitting around - walking and looking at the sights can be far worse. There have been many cases of heatstroke this year because people underestimated the effect of the heat - it has been literally killing.
Thank you for the advice. I’ll be looking for interesting but cool churches etc I think. I have a friend in the north of Italy and she said it’s been unbearable.
I came over to the UK for 2 months to miss the heat and I live half way up a mountain almost in Austria so you can't get much further north! Before I came it was mid to upper 20s and I couldn't go out after about 11 am or I felt really unwell. Then while I have been back it has been up to mid-30s and quite humid for us. And here - it's been like early spring in Scotland and I was cold!!! Now there is likely to be snow a bit close next Friday - I have a hospital appointment in the low valleys and was looking forward to lunch outdoors - won't be an option uness the sun is shining!!!!!
Have you tried having a physical once over by a good physio or osteopath to make sure these pains aren’t due to more functional musculoskeletal issues that have taken root? I found I had got myself into a mess due to long term lack of proper exercise, subtly bad posture when moving about. My shoulders and pelvic/buttock areas were desperately in need of strengthening. I had sciatica from tight buttock muscles, buttock pain, pelvic ligament pain, all sorts.
I am on 6 mg pred - diagnosed 2018 - caring for husband at moment (post open heart surgery) but usually walk, swim, do Pilates and tai chi - pace yourself
As someone else commented even after giving up the Prednisolone sometime ago. I still suffer buttock problems and back pain. All through having PMR I never stopped going running as my legs still worked even though it gave me backache. I just felt in the end that being on steroids was not for me and quickly reduced from 6mg to nothing, not slow steps. There was no adverse affect from that. I am just always doing stretching and gym work to try and improve the pains I get.
There is a way back to feeling good, I have run a 1,000 km in competitions in the last year at 66 years of age. You just have to accept that when you get older there will always some niggles including having arthritis in my knees, they just need a bit a of a stretch before running.
No matter what advice is given we are all individual, you know your body best and what is right for you to do.
However - I do have to say, going quickly from 6mg to zero was risky - you could have been in all sorts of trouble if your adrenal function hadn't woken up. How long had you been on pred?
I was on Prednisolone and went to 0.5mg and lived with the pain for a while, then back onto 15mg in July 2021 in October I decided to reduce to zero from 6mg which I did by the end of January 2022.
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feeling weird after every meal
Lots of awful pain.
Help please!
Leflunomide
