Good morning. After ups and downs I am now reducing slowly from 6mg to 5 and half mg of pred. I feel my PMR symptoms have changed.🤔 I can sleep comfortably in bed in whatever position I like with my arm tucked under me. This was never possible in the past. My shoulders don’t hurt any more either. However I do have different symptoms. My upper arms are sore in the morning and my hands can feel stiff too. My ankles are still puffy and my pelvic area also feels stiff particularly in the morning. I’ve noticed this in the last few days as I’ve had to get up early to take a train . (6:30am). I’m wondering if PMR is abating and the new symptoms are arthritis. My pains and swelling are bilateral .. I’ve had CPP test and it came back negative. Should I try ibuprofen for a few days or is this a no no with Pred? Thank-you in advance 😀
Changing times : Good morning. After ups and downs... - PMRGCAuk
Changing times
Upper arms is more likely PMR than OA - I assume you mean osteo rather than rheumatoid arthritis? I'd be inclined to think the PMR is still there but on its way down, it can change in symptoms over time. But poor adrenal function can also lead to muscle aches.
You could try ibuprofen to see if it helps - but take it with food and not too much as it doesn't go well with pred. If it DOES help, you could discuss it with your GP. But you could also try paracetamol - it is safe with pred.
Thank you for your response. Yes I do I’d mean osteoarthritis ….I’ve had both tests done for RA so hopefully not morphing into that. I think it has to be pain management so will try the ibuprofen . I’ve tried paracetamol so will try ibuprofen with food. The arm pain is not nice ☹️
Thanks again
How much more PRED gets rid of it?
Hello PMRpro. I think I’d probably be pain free at around 7mg.
And at 6mg? Or 6.5mg? You are obviously likely to be stuck at 5,5mg ...
I’m fine at 6.5mg. At 6mg some pain which wears off in the morning. I have to try and get down to 5mg as my rheumatologist advised that I can then have a PET scan. I really do hope that I don’t get stuck at 5.5mg. 🙁
When I was to have a PET-CT I simply reduced without considering the discomforts it introduced, just to have the scan. Others have done the same.
I will continue to reduce. Does it become dangerous if the pain increases?
Dangerous? Probably not providing you aren't developing GCA symptoms. Long term low level inflammation isn't ideal for the body - it does predispose you to developing various disorders including cancers and depression. But in the short term, probably no worse than waiting for a diagnosis.
Hi Pangolin. The return of osteoarthritis as one reduces pred is familiar to me. I've had PMR for nearly two years and am now down to 4.5mg pred and waking with the old stiff fingers, painful thumb joints etc. that had faded away when I was on >10mg.Through an active middle age, I got used to various joint and muscle pains from 'overdoing it'. By my 60s, and especially after retirement, when the serious gardening and DIY started, I developed OA, mainly in my hands.
PMR pain was recognisably different and hit me around my 70th birthday when I was suddenly struggling to get out of bed etc..
At 4.5mg pred, my OA is returning and my only PMR symptoms appears to be related to sorting out my adrenals. I'm short-tempered, woozy and light-headed often (and also trying to cope with the demands of the Zoe nutrition app!; I'm hoping that it's never too late to reduce inflammation in your system). Paracetamol works for me, especially for any head pain.
Next issue to deal with - heal my marriage; then tackle the OA?
I know a lot of this is irrelevant but....
All the best, OP
Hello OldPenny, thanks for your detailed response. How did you have your osteoarthritis diagnosed? I expect there are lots of us on this forum that reach a certain age and it becomes very difficult to know what is what when it comes to health. I forgot to mention that I have stiff knees in the morning and they are quite swollen. A strange ‘nodule’ has also appeared on the knuckle of the first finger of my left hand. 🤔
Is it a Heberdens node or a rheumatoid arthritis nodule? Heberdens nodes appear on the most distal joint of the fingers (nearest the nail) and are associated with osteoarthritis.
myrateam.com/resources/hebe....
If it is at the knuckle it may be RA
aafp.org/pubs/afp/issues/20....
I continue to believe I have rheumatoid arthritis but have tested negative twice for the rheumatoid factor test and CPP test. I know I could fall into the group of people who don’t show a positive .. the module is on the middle knuckle not the joint nearest the nail. If I show it to a Gp do you think they could tell by looking and would this be good enough for an RA diagnosis? 🤔 which I really don’t want.
Do they look like the picture I linked to? I would speak to the GP, I doubt they would make the firm diagnosis but they should be able to talk to you about your fears. I know that you don't want it to be RA, but late onset RA and PMR are not that different - except there is a wide range of treatments for RA, unlike PMR. What worries you so much about RA?
Yes. Thankyou for sending. The nodule is more RA like the second picture on the knuckle. The article says that you are more at risk of cardiovascular issues if nodules appear 🤔. I’m worried about RA because of the medication side effects, shortened life expectancy and progression of the illness.
If you are on the right medication introduced early, then the progression is minor these days. But if it IS RA, then refusing to have it diagnosed and labelled doesn't change anything except you aren't able to be managed optimally. And they do monitor you for the other stuff.
Very sensible. Thank you
Sorry for the late reply, Pangolin. I think I might have told my story before, but a few years ago, before the C pandemic and my PMR diagnosis in September 2021, I had stiff and painful fingers, including some 'trigger' issues and painful basal thumb joints, enough to affect my sleep.
I had x-rays on my hands/wrists and subsequently ended up seeing a specialist at the local NHS hospital who gave me one option really - steroid injections after a more detailed ultra-sound scan.
I dutifully turned up for my appointment, around the beginning of the pandemic, and was scanned by a medic who effectively talked me out of having the injections by pointing out that:
1. He'd seen far worse
2. The injections would lower my immune system.
I did not have the injections and lived with the triggering, which improved over time, and the joint pain, with some medication, until PMR.
What caused the PMR? Who knows? But my older sister has had it (now on a v low maintenance dose after >5 years) and I'd been through the early stages of the pandemic, AZ vaccine etc....🤔
OP
Thank you for replying. Maybe I need hand and wrist x-rays. I think I really do need more information on what is happening to me.
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