I wa diagnosed with Pmr yesterday after quite a long journey. I’m only 56 and very fit, but last few weeks have been hard.
Rheumatologist at the hospital says I am going to have to go on steroids, but is that really necessary? Why can’t I stay on Naproxen? 1000 a day seems to sort everything out for me.
Very best love
Alicia
Xxxxx
Are you saying that Naproxen works for you? If so perhaps your doctor should review her diagnosis as PMR tends to only be helped properly by steroids. As an aside, I personally would prefer to be on steroids long term than Naproxen.
Hi Limpylissy,
One of the first things I learnt was that if your pain & discomfort responds to painkillers, it's not PMR. Those PMR symptoms will only be relieved by steroids.
I think you may need to discuss things further, as with all due respect to your rheumatologist, it seems like they're probably not as familiar with PMR as they perhaps need to be.
Hello, as has been said, long term Naproxen is not necessarily better than steroids; it just comes with different risks.
Have a read of this
nhs.uk/medicines/naproxen/c....
When you say Naproxen sorts it out, what do you mean exactly?
Can you say a bit more about your journey thus far? What sort of symptoms do you get, where exactly and how do the day and night pan out?
As others have said, if Naproxen gives you full relief, then PMR may not be the correct diagnosis and you may need a second opinion. On what basis did they make their diagnosis?
Hello to everyone that replied to me - really appreciate. For more details, three months ago, I woke up feeling terrible aching and with a low fever. I kept thinking it would go and took ibuprophen but after two weeks went to GP. Bloods came back high CRP, high ESR, high platelets and rheumatoid factors. I’ve had lots of blood tests since and they haven’t really xhanged. They gave me Naproxen and urgent referral to Rheumatologist. Rheumatologist said they thought could be reactive Arthritis but sent me for MRI, x rays and ultrasound. for each scan I stopped taking the naproxen and each time, after a couple of days the pain came back so bad I couldn’t turn over in bed, bend my legs to sit on the loo or stand up afterwards, get out of bed, walk up or downstairs or lift my arms. One morning, I couldn’t even lift my head. After 1000mg of naproxen, the pain is bad but at least I am mobile. In the three months of tests I have lost nearly 8kg (I only weighed 68 to start with) and felt incredibly tired and very randomly weepy. I have carried on with my full time job and found it all incredibly difficult. Last Friday they gabe me the results of the scans and told me I have ‘ a lot of inflammation where the tendons meet the hips on both sides’ and bursitis in both shoulders - they diagnosed PMR and said I had to go on steroids. So long as I can move I don’t mind if it hurts a bit. I have to go back to the hospital tomorrow for an ‘educational’ appointment. I was hoping then to ask them if I could keep taking Naproxen until the PMR goes away. They gave me a steroid card to carry that says “this patient is physically dependent on steroids” it scared me so much. Thank you all so much for your responses.
Given the option I personally would choose pred - naproxen is not suitable for the sort ot durations that are common with PMR.
To be brutally honest, this all sounds a bit unsustainable and I don’t doubt your determination in trying to make it so. You’re not the first to be trying to carry on while the body is screaming, doing everything they can to avoid steroids. Naproxen in these doses taken for potentially 2 years plus scares me much more than a reducing dose of steroids. The fact that it gets you moving but the pain remains bad suggests the narrow mode of anti inflammatory action is not sufficient to deal with the inflammation of PMR. It doesn’t sound like enough of a trade-off. You need to consider the consequences of the side effects of long term poor physical function and long term NSAIDs. You are losing weight, are weepy and exhausted; perhaps you need to face this head on.
The physical dependence you read about is just regards the adrenal glands that will be shut down until you get below 5mg or so. It means that if you have an accident you may need to be given an extra steroid boost at the time so you carry a card. When your adrenal glands recover this isn’t needed.
Hiya SnazzyD, thanks ever so much for your reply. I am sure you are right. I went back to the hospital today for my ‘educational’ conversation and they said pretty much the same. They described the long term side effects of naproxen and I guess if I started getting anything like that, they would stop my prescription for naproxen anyway.
The nurse was quite perceptive and said she could see I didn’t really want to think of myself as an ‘ill person’ dependent on medications, but that I might just have to find a way to get my head round it. I’ve had pretty nasty symptoms for three months so it doesn’t seem likely that it will all just disappear.
Thank you snazzyD and everyone here for being here. I’ve decided to start the steroids tomorrow and I think I might feel a bit bleak tonight if I didn’t have your good stories and support to read xxxxxx thanks ❤️❤️❤️
Good - we're here to help you cope. Just ask.
Well done! I think most people on here were active and busy busy. Some extremely active. Adjusting to being an ill person is the hardest of all but it is a lesson we have to learn for the medium term. What you must do is rest because your immune system is attacking you and until it settles, your body needs rest not a forced continuation of normal life.
Pred may make your mind race a bit and you may think you have more energy than you have, especially when the pain goes. Don’t listen to it! Some people like me feel very tired and limp when the Pred kicks in but that wears off after a few hours. Your heart might feel faster and you might feel buzzy and sweaty, but these are all normal and do settle after a few weeks as your body gets used to it. Whatever you get, we’re here to cheer you on and tell you if what you are getting or not is ok, it usually is.
Whichever course you choose, it won’t be a quick one so it is best to start planning as such, starting with some proper sick leave.
Hi and welcome,
As others have said, a bit more information would be useful.
I was prescribed naproxen before my GCA was diagnosed- and it did absolutely nothing for pain so would query your diagnosis.
Naproxen is sometimes prescribed for Rheumatoid Arthritis. So if it helps maybe that’s what you have.
Presumably you had blood tests and your c-reactive protein (CRP) and/or erythrocyte sedimentary rate (ESR) were elevated? This can be caused by all sorts of things, including injury and infection. Once those are ruled out, autoimmunity is suspected, and the focus turns towards working out which autoimmune disease is at work. When all the others are ruled out, that's when suspicion falls upon PMR. A strong, rapid response to a short trial of prednisone/prednisolone confirms the diagnosis. About 15 to 20mg/dy for 2-3 weeks is typical. Make a decision after the trial. There's no need to taper for short courses.
The more info you put in your profile (bio) the more people can help.
Two things - if Naproxen works, the chances it is PMR are much lower. It might be - but our experience is that it is not usually helpful.
And as someone who has needed steroids for over 15 years to manage the inflammation, I'm glad I wasn't on Naproxen as its long term adverse effects are probably worse than pred! All NSAIDs are risky used long term and none are approved for long term use nowadays.
I was on 1000mg enteric Naproxen for 2 months prior PMR diagnosis. It barely took the she off, unlike pred that acted like a miracle addressing PMR inflammation.
And the Naproxen I was on was enteric coated to protect my stomach. My GP mentioned it was not recommended long-term (and PMR can be active for over 2 years before burning out).
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