Thank you so much for all the amazing help and advice you have all given me. 🙂 You are all wonderful!
In my latest GP phone appointment because of the knowledge you all imparted to me I was able to suggest increasing my Prednisolone from 15mg to 20mg. The pain/stiffness had got so bad during the 3rd week on 15mg I couldn't cope.
After 5 days on 20mg the symptoms are back to a manageable level. 🎉 Still of course hoping for the elusive pain free state.
Interestingly the GP said the "indicated dose of Prednisolone for PMR in Primary Care is 15mg." The implication being that if that doesn't work then they usually refer you to a rheumatologist. 😱Goodness knows how long that would take and how you would cope whilst waiting.
Luckily she's a lovely Dr and said if I was happy that we were "deviating from the indication" and since I've not had any side effects yet 🤞 she was happy for me to try 20mg. Phew!
If I hadn't had all the insight from you lovely people I would not have known that 15mg dose seemed too low. So thanks a million.
Still improving so really hoping this dose is high enough.
I have an in person GP appointment in 2 days to review the week on 20mg but obviously will resist any tapering too soon (even if painfree by then).
I am a little worried since we have a 3 week holiday on 14th May so will mention that to the GP. But for the moment I am revelling in the improvement 20mg of Prednisolone has bought meaning I am now at a manageable level of pain/stiffness. 🎉🙂
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Good to hear… actually most guidelines say lowest starting dose which gives good results between 12.5mg to 25mg…. And another says 15-20mg with at least 70% improvement within 7 days .
Oh.. your last sentence gave me a good laugh… sorry..
but they are only recommendations and guidelines - and as we say not set in stone, although some seem to think they are… and therein lies the trouble.
Personally I think the second is probably the most important publication in the field since 2015. It seems crazy that the NHS lags so far behind in understanding that the 15mg recommendation should not be fixed in stone. Every patient is different, both in their PMR and in the way they absorb and respond to pred.
My impression over the last 15 years since I have been involved with the charities is that the slightly higher starting doses they used to use achieved better results than their "terrified of pred" 15mg so common now, especially when used together with the precipitate reduction plans after a couple of weeks. Unless all the accumulated inflammation has been cleared out successfully at the start, tapering will never be entirely straightforward and flares will be common.
PMRpro, thank you as always for all the excellent information. I'm just so glad she was amenable to me trying the 20mg.
She did mention the length of time when I had symptoms before being put on the Prednisolone as pertinent. The implication being the longer that had been the more inflammation had accumulated so would need a higher dose to clear.
I really hope this dose will continue to improve symptoms and clear all the accumulated inflammation.
Doesn't always apply. I had had PMR symptoms for 5 years before getting to try pred. 15mg achieved the holy grail 70% improvement in under 6 hours. But it took me over 4 years to reliably get below 10mg and I still have PMR 15 years later.
Definitely explains why you are such an expert.I can't imagine having the full on unchecked PMR symptoms for 5 years.
You, DorsetLady and other posters on here are such an inspiration. The fact people do cope and find a route through (however difficult) does give me hope. 🙂
I'm focusing on an anti inflammatory diet too (Mediterranean with nuts and berries) but trying not to over eat. Not sure if it will specifically help but trying to give my body quality fuel to work with.
Plus it feels like what I put in my mouth is one small thing I can control.
It is complicated - but many doctors think too simplistically: give pred, all back to normal, lasts 2 years, off pred and sail into the sunset. Not at all I fear ...
Don't feel bad, I am back at 22.5 mg (had to go back to 25 mg after attempting 15 mg) I cannot get below 17.5 mg-- yet. Not looking forward to the Rheumy appt in a month..but whatever, it's not his pain or life which gets ruined by the pain..and I will give him this, so far he has acquiesced when I stand firm.
He does also need to consider this may not be "just" PMR - inability to taper the dose with that much difficulty very often does indicate there is something else at play. Getting stuck nearer 10 is not uncommon and wouldn't make me curious - but 17.5 is another matter.
All I know for me is that I can set my watch to the pred working at about the 1 hour to 1.5 hour mark, when my pain goes away like magic. So whatever I have is 100% responsive to it, and quite literally everything else has been ruled out. I might try the methotrexate next. That or when I get to 17.5 again, convince them I need 1 mg tablets to try 1 mg down at a time..they refused that last time. I suppose I could cut them in 1/4s.
I'm just glad I am able to work part-time again thanks to the prednisone, we would have had to sell and move from our house - what with most bills being double what they were 3 years ago when we moved in.
Again, thank you for all of your knowledge..it helps us all so much.
We had a similar experience many years ago - we did the sums and could JUST afford to have a baby. Between that decision and me getting to the end of maternity leave the bills had shot up so we would be left with a mere £50 a month to eat, clothe ourselves, run a car and any "fun". £50 paid for rather more than it does now but I needed at least a part-time job. That wasn't an option - full time or nothing,
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