im now reduced on my Pred to 10mg but im taking whacking loads of Naproxen to ease the pain. Still both shoulders, arms , hands, knees and also hips a bit too. The rheumatologist will see me in another 2 weeks - he says its either PMR Steroid resistant or … something else - he even thinks it might be reactive arthritis and just get better on its own. Im in agony - and its been 6 months and steroids ( up to 30mg) didnt have much impact . I dont know why Rheumatologist did not think to increase the Pred to 60mg to see . He said at 25mg i was on a toxic dose that was doing nothing. He said at the age of 56 i was like an 80 year old and everything is really serious. I am seriously overweight- but thats not going to come off overnight- after another broken night of sleep and pain im just very confused and despondent. Its been constant pain since March.
Still - i must find some joy in life. Everyone i meet can not believe im still working full time. I want to go off sick but i dont even know how to do this right now. I dont feel safe at work.
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JessJess21
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If you aren’t fit for work then you need to get a note confirming that for your employer - see this link - and if you feel unsafe at work then you really shouldn’t be there..
If you are needing to take naproxen and it is helping then would say your pains probably aren’t Pred. So you do need to find out what you do have.
As for 60mg, that is not a dose for PMR, it’s for someone with GCA with sight issues, so it would really be irresponsible as well as counterproductive of the Rheumy to even consider it. 30mg is high for most cases of PMR, so if that didn’t help, then your Rheumy may be correct in thinking you may not have PMR, so further investigations are required.
Yes, but as my late husband [who had coronary issues] once said - “ I know others may have more pain and problems than me, but my pain is still my pain and it affects my life”.
I'm really not sure what your rheumy is thinking about - taking NSAIDs together with pred is not advisable, and Naproxen is an NSAID. I would disagree with his stament - the definition of PMR involves steroid responsivity, If it doesn't respond to pred, it isn't the PMR we talk about but a myalgic presentation of something else - that isn't steroid-resistant PMR!
Why a reactive arthritis? LORA (late onset RA) is not a reactive arthritis but it is known to present identically to PMR and is impossible to distinguish a difference at the time. If pred isn't working though, that is a flag that this is possibly LORA.
As DL says, if you aren't fit to work - then you can self-certificate for 7 days and then your GP will sign you off.
Many of us have a lot to deal with, but it doesn't have to be compounded by poor medical care. You have been left for 6 months - yes, it could be a reactive arthritis, but that is only one and, frankly, less likely diagnosis.
Thank you whdn you put it like thst it makes me want to go private - but they are the same docs - just quicker. ( and i was fast tracked) . Will keep you posted. Feeling quite low.
You do get to choose who you see and we have our favourites for obvious reasons. Part of the problem is they don't really appreciate just how much pain we are in. Was it the rheumy who suggested Naproxen? Does it make a difference?
How long were you on 30 mg? I was taking up to 35-40 on given extra bad days ..but mostly was on 30 mg and my Dr. told me to stay at that for 4-6 weeks (this was after 25 mg didn't do much, and I did that myself and THEN reported the results to him..lucky for me my Sed Rate actually went UP on that dose, so then he believed me more). This was also after all else had been ruled out.
Still took me over a year to get to 13 mg (just started this week). I will say on 30 mg I felt 99% better, though, whereas you don't seem to be near that. Maaaybee try that, but I'd not take the naproxen if you can at all help it. And also, if possible, try getting a month off of work?
I feel for you, it's very frustrating..keep us updated please.
Er - and what else does he think the pred is for? The pain relief was because the inflammation that causes the symptoms was slowly coming under control - as evidenced by the fall in the blood markers. It isn't a cure - it is a management strategy to give a better quality of life in the meantime until the underlying cause of the problem burns out and goes into remission. There is no cure.
PMR is just the name given to a set of symptoms due to an underlying condition and there are several.
That may be his opinion - but the pain is caused by the inflammation.. so to reduce/control the inflammation, you need Pred - and the correct amount! Duh.. 🤦♀️
..and early days you need a high enough dose to clear out the built up inflammation prior to diagnosis and to control the daily shed.. so it's working doubly hard. 2-3 weeks might be long enough for some [although I have my doubts], but not for everyone.
I take Naproxene from time to time with omneprozole to protect stomach. How quickly did you reduce your pred. It has to be done very slowly at 25 mg not more than 3mg down each week. Its a very slow process and if you are in pain i would put it back up say 2 mg. Have you had headaches.
hello ! Thanks for replying- im reducing at 5mg a week. I am in pain yes - and taking the naproxen every day - im hoping to be pred free in 3 weeks. What a process! Im taking omaprazole every day and will see consultant on the 13th. 3 weeks ago i was on 25 mg now im on 10mg.
Down to 5mg that is fine - but after 6 months on pred at those doses, you will have very suppressed adrenal function and once you are at 5mg you MUST slow down a bit - preferably to 1mg a week. If you don't you could develop an adrenal crisis and become very unwell.
Be sure you know the signs, just in case, and if you feel really unwell, confused, dizzy, have diarrhoea, please get someone to call 999 for you and say it is a potential adrenal crisis in a longterm steroid patient who is stopping pred. If you can, take a dose of 10mg pred - but if you are faint and losing consciousness, that is risky.
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PMR or Not
Update on my PMR journey
New , and naive about PMR, :-( 
Now confused....
