Before Christmas, I had a flare. I was on 7mg of steroids, 10mg of methotrexate and was given 2 Naproxen a day to try and help the pain in my hands and wrists. It only took the edge off the pain but there was a difference if I stopped them. I eventually spoke to the Rheumy nurse on 15th December and she said she would email my Rhemy but suspected I would not get a reply before Christmas (still waiting) but to put my steroids up to 12mg and within a few days, I felt so much better... I did stop the naproxen a few days later but it does seem that it is helping the pain too so have stayed on them as well.
The reason I am on methotrexate is to try and help reduce my steroids but I am only at the beginning of that journey so it is too early to tell if it is helping. I am due to see Rheumy again sometime in January too...
My question is this... I am feeling good again. Pain in hands and wrists down to between 1 and 2 (on the 1-10 scale) and my neck is also hugely improved. Do I try and get rid of the Naproxen or start reducing the steroids again? Do I take a couple of days without Naproxen to see how I feel or should I leave Naproxen in there and work on the steroid reduction?
If I have been on 12mg for 2 weeks and 2 days do I start the DSNS method again with 1mg reduction or can I go back to 10mg quicker to see how I feel... or should I just leave well alone and stay where I am for a while longer?
I want to start this year without yoyoing again. Your advice would be appreciated.
Happy New Year!
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Mamamia21
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Hello, Mamamia.Personally, I would remain on 12mg Pred for a while: perhaps another week or two. In fact, I wouldn't be changing anything for the time being and instead enjoying the relief from pain.
My immediate question would be, is it the higher dose of Pred that is relieving the pain or is the naproxen? You wouldn't know until you started 'experimenting' and I would advise you to put that right of your mind for the immediate future.
What dose of naproxen are you taking? Are you splitting that dose so that you are taking it twice a day?
I think you are right... I have always got it in my head that I need to reduce and do feel that sometimes I start too quickly. Your advice is good so thank you!
I am on 500mg twice a day. One in the morning and one at my evening meal around 7pm.
Good! Slow and steady wins the race although the PMR journey is never a race. Think of the egg and spoon event 🙂: drop the egg, stop to pick it up and you will reach the end point later than you would have had you trotted on at a measured pace.Tick for splitting naproxen dose.
I hope your rheumy appointment comes soon. Waiting is so frustrating!
I might be inclined to give the 12mg another week….and then drop to 10mg before you see Rheumy (assuming appointment goes ahead) so you can advise him of situation.
Then at 10mg restart the slower taper……and yes you do want to stop the yo-yoing - but that is sometimes easier said than done once you get into that cycle.
Hand and wrist pain certainly are signs of PMR despite what some doctors think, but if Naproxen helps just wondering if there is something else involved. Has that always been a symptom of your PMR, or something new?
Hands and wrists are new. Only started about 3 months ago but came on very quickly when it did. Naproxen helped but it was the steroids that cleared it.
Okay, well I know for some it is a sign of a flare….sure they will be along shortly to advice. As for now, I would stay at 12mg as suggested…and hopefully discuss with Rheumy.
Firstly, as you have taken advice from the Rheumy Nurse - did she mention about reducing your Prednisolone? How long have you been on Methotrexate?
My impression is you are trying to run before you can walk - l think you need to take stock, it’s a New Year & a Fresh Start.
I wouldn’t stop the Naproxen yet as it’s possible you may have arthritis in your hands & wrists - you will note that the Consultant/Nurse will always check your wrists & hands - l would ask the Nurses advice on that & again about the taper of Prednisolone.
Personally, l would start my taper from 12mg in 1mg drops to 9mg then from 9mg drop in 0.5mg steps.
I’d be interested to know how long you’ve been on Methotrexate?
As you have spoken to your Nurse & are on MTX & Naproxen as well you really should be guided by her.
Kind Regards
Mrs N
For Info
I am on long term MTX at 25mg - Tapering Slowly (again) on 10mg Prednisolone & Meloxicam for OA in my knees & back.
Hi Mrs Nails No mention of reducing again but know that is my goal so wondered if I was feeling better if I should start again now. I do realise that is part of my problem... I want to start reducing as soon as I feel better and understand that it is not always the best thing to do. I need to be told to hold off sometimes... too impatient but having been on this journey for 5 years now so I should know better!
I only started methotrexate on the 21st October to try and help reduce the steroids so I think that is in my head too... what is the point of taking something else if it does not work but it could be that the MTX is too low and the Rheumy may increase next time I see her. It could certainly be arthritis in my hands and wrists but who knows?
I will stay put for now and enjoy the relative pain-free few weeks ahead and wait to see what the specialist says in a few weeks time.
The Relentless Quest to Lower The Steroids is drummed into us from the day we start taking them…. However, it really should be to get to the lowest dose possible to keep the PMR Symptoms at bay……..
But as l said, it’s a New Year so a New Regime 😉 Rheumy Nurses are invaluable - l’ve had two teams one in Wales & now this one in England - now wether l’ve just been lucky l don’t know but they are fabulous - particularly if you're on MTX as well.
My thoughts are that the Consultant will increase your MTX as 10mg is a starting dose & then a Slow Taper, never more than 10% so that will take you to 9mg & from there 0.5mg drops.
Keep in touch & remember the tortoise & the hare…….
I would say you can drop to 10mg quicker - because this was an attempt to clear out the flare. How is the MTX going? The hand and wrist pain was before I gather - has it got worse after you started that? How are any side effects?
You have history that suggested axial arthropathy - not least the improvement on Humira and some relief with Naproxen. There are at least 5 anti-TNF biologics to try if one isn't working well - that leasves another 3 to try.
Mind you - I'm darned if I could reconcile taking both MTX and Naproxen on top of pred to get what appears to be similar relief to maybe 8-10mg pred which isn't far above the physiological dose at which most good rheumies stop worrying about. For the vast majority of my PMR journey I haven't got under 10mg - just a year or so in the middle where I got to 5mg before trying further and having a massive flare. MTX was awful and I haven't tried anything else but I don;t have problems - no identifiable adverse effects except cholesterol being high. The statin I tried once almost had me in a wheelchair - my favourite cardiologist is happy, this year's check-up bunny wasn't so we had that conversation again. I have the pack of a different one, I will try them after I have seen the rheumy next week.
This was my thinking too..."Mind you - I'm darned if I could reconcile taking both MTX and Naproxen on top of pred to get what appears to be similar relief to maybe 8-10mg pred". Think that I might try and drop the Naproxen over the next couple of weeks to see if it makes a difference to the pain.
Methotrexate has been ok, tired on the first day of taking it but apart from that no other side effects. Yes, hand and wrist pain was one of the reasons I decided to give it a go. The pain stayed bad until I increased steroids again to 12mg.
I have managed to get to 8mg comfortably but they are adamant that I get lower... Hence the continuing yoyoing.
Hopefully, I will get more of a plan when I see specialist later in the month 🤞
They are just making it worse - once you start yoyoing it often makes subsequent reductions harder. How much do you try to go down at a time? Some people can't manage the recommended 1mg at a time below 10mg - some even struggle with 1/2mg spread over weeks ...
I managed to get to 8mg at one point going down 1mg at a time and then struggled with .5 to get to 7.5... The pressure to reduce is significant. Hense the reason I'm now trying MTX.
You are not heading relentlessly to zero with pred - you are looking for YOUR dose. But they are so terrified of pred they will try anything. I tried MTX - after a month I couldn't function, I couldn't even lift my feet walking back from the village and it is all downhill! My hair was falling out in chunks and I had pred effects I'd never had before on prednisolone and prednisone - but had had with methyl pred which also made me feel ill and didn't work at the same dose although it is meant to be more antiinflammatory. MTX increases the effect of pred, that is how it works as a steroid sparer, but it can also enhance the unwanted effects as well.
It sounds like you have had a shocking time on MTX! Thankfully nothing like that for me just yet.
I have often been tempted to stop seeing the Rheumy and just work with the Dr on my own reduction. However, when MTX was suggested at my last visit and I rang the Dr concerned as I was about to have my 2nd Covid Vaccine I was told to postpone taking it which was good but then she told me that I was naive to think that I could reduce without MTX... I feel like I am on an endless treadmill... If Dr will keep prescribing the steroids and I go quiet I think I would have fewer problems to be honest. Is that allowed I wonder 😂😉
I only took it for 4 weeks - I stopped it as arranged with the rheumy for me to travel to S Korea to a science meeting, wouldn't have made it otherwise. By the time I got back I was feeling human again and said "No more ..." The rheumy accepted that with no problem. I have thought about leflunomide but wasn't in a position to risk the adverse effects because I was sole carer for my husband. That is no longer a question - but I live alone so weeks of needing to be close to a loo isn't attractive either!
I think SHE is naive to think you will get off pred altogether using MTX - it does often work to get patients to a LOWER dose but at the expense of more suppression of the immune system and causes concern amongst immunologists in the context of long term effects. They believe the combination can predispose to other problems including cancer. I discussed it at length with a top immunologist from Munich.
A lady in the Scottish charity got a few mg lower on MTX but said she never felt well. She tried leflunomide and said she felt it kick in and she did get off pred altogether - but developed quite bad neuropathy so stopped. That resulted in a major flare and returning to 20mg - she'd been on 8mg for ages with MTX. She restarted lef at a half dose which didn't work well but a higher dose was better. Not entirely sure what the status is now. But it isn't as simple as they present it.
I take a high dose of pred but nothing else for PMR, it is well managed even if I am at over 10mg and have been up to 19mg while my husband was so ill to be able to function. And I have no real adverse effects we can identify - no sign in the past of diabetes, hypertension well controlled in the context of atrial fibrillation which was almost certainly caused by the a/i part of PMR, weight is OK, no moonface, just chubby as I have been all my life. No mental health effects - I was far moodier and bad tempered with untreated PMR!
Thanks for taking the time to reply to me so much today! I will mention the cancer link as there is history in my family and that does ring warning bells... There seems to be little point in taking it if all I end up with is adding MTX into the mix when I was doing ok on steroids. I have averaged around 10mg most of the time and it seems to me that I have no other side effects apart from Oesteroperosis which I had before taking steroids anyway. Should have a DEXA scan sometime soon as well so will find out how I am getting on with that too shortly. I am on Alendronic Acid too for that... Just a regular pill rattler these days 😂
I must admit I would be none too keen to take Naproxen on a long term basic, perhaps very occasionally, but not every day. I think I would try and drop the Naproxen, carry on at 12mg with the pred to make certain things are OK and go from there.
Hi Mamamia, others are more qualified than me to answer, as I’m only on my early stages of methotrexate, I used Naproxen as needed before, but was told I mustn’t take it with methotrexate. So I was surprised you were prescribed it. Although there are often inconsistencies with advice we are given. Just thought you might need to check?
oh gosh, I don,t have any advice for you, but I am surprised your doctor had you on Naproxen, which I understand to be an anti inflammatory, and been told by my rheumy and GP can t take even advil while on prednisone?
Sorry to hear of your woes. All seems very confusing once you start adding in additional medications for emerging symptoms.
I will say I was on coated Naproxen for four months 2 x 500mg a day, prior to being diagnosed with PMR. It made a small dent but didn’t provide much relief. When I was diagnosed and started pred my GP advised that I stop taking Naproxen immediately.
It is difficult when we are left to our own devices to figure out complex health issues. That’s where your specialist (rheumy) should come in to help you navigate the situation. We should be able to work as a team with our health care professionals and not have to constantly advocate for our health.
I start methotrexate on Tuesday recommended from a new rheumy, but my experience with her has already been fraught with confusion and lack of direct contact. I’ll give it a go but if side effects emerge, or if it’s not effective, I’ll be stopping that treatment and exploring other options/doctors.
It certainly is a minefield... I have decided to reduce the amount of Naproxin I am taking to see what happens. Hopefully, I might be able to drop it and then just work with MTX and Steroids... I have done nearly 12 weeks on a low dose of MTX which is doing nothing as far as I can tell. I assume the specialist will increase when I see her so I will just have to wait and see.
Naproxen helps my arthritis pain, but I use it only a few doses each week. Many years ago, it was prescribed for fibromyalgia. I suddenly was in the ER with an intestinal bleed. About five years ago, I tried taking it daily. After about a month, I developed a hiatal hernia. In both cases, there were no warning symptoms.
Thanks for this AdoptMeow, I have reduced to just one a day currently. Tried to stop but the pain in my wrists came back. I might try every other day and see how I go... It is a balance between very little pain and what else it might be doing... Tough isn't it!
What I'm having difficulty with is decreasing inflammatory foods so that I dont need as much medication. But I am doing better with avoiding sugar, wheat and vegetable oils. Also keeping up supplementation with B-complex, C, D3, magnesium and omega 3s.
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Update ... flare has nicely abated...not on methotrexate YET! what do I do when medical insurance stops my cover for PMR?
GCA tapering and differing rheumie views. I think I now have the one who understands.
Methotrexate 
Help tapering Prednisone 
