Naproxen instead of Prednisolone : Has anyone else... - PMRGCAuk

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Naproxen instead of Prednisolone

JanetT58 profile image
55 Replies

Has anyone else been told to come of steroids and take Naproxen instead? I have been told to reduce from 5mg to zero (4mg this week then 3 then 2 etc )and use Naproxen instead as I’ve got low sodium I’ve had it before when I was first on Prednisolone and have had it since January it despite adding salt to my food over the last month.

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JanetT58 profile image
JanetT58
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55 Replies
piglette profile image
piglette

Naproxen is not a substitute for pred to help PMR. It is a narcotic that acts as a painkiller, but is normally pretty useless as far as PMR is concerned. In fact pred tends to increase sodium and that is why we are told to cut back on salt. Who said you have low sodium? What did they suggest you should do about it? I am not sure that adding extra salt to your meals is the answer.

JanetT58 profile image
JanetT58 in reply topiglette

I’ve had blood tests that show low sodium. They said no alcohol and to add salt and think it might be the steroids causing it.

piglette profile image
piglette in reply toJanetT58

My rheumatologist told me to cut down on salt as I was taking pred. I am not sure cutting out the pred is going to help your PMR.

HeronNS profile image
HeronNS in reply topiglette

As far as I know naproxen is not a narcotic. It's a nsaid.

piglette profile image
piglette in reply toHeronNS

I always thought narcotic was another word for a pain killer, but you are probably right it just refers to opioids.

HeronNS profile image
HeronNS in reply topiglette

I believe that is it's definition. Codeine is a narcotic for example. Naproxen isn't addictive, codeine is.

americanaddictioncenters.or...

PMRpro profile image
PMRproAmbassador in reply topiglette

Not a narcotic - it is an NSAID. Not that that makes it any better!!!

HeronNS profile image
HeronNS

I found out by accident almost two years ago that I was sodium deficient. An acquaintance I was talking to, telling her I kept waking up with a headache which went away when I ate, suggested I take a little salt on my fingertip and taste it. She said if it tasted good, maybe almost sweet, that I should have more. That I should keep on doing this until it stopped tasting nice. It was the last day of a tour we were on, and against my better judgement I did as she suggested but never got to the "ick" stage. However, next morning, no headache! When visiting family on our way home I said in the evening that I thought I needed some salt. And it was after a few fingertips of salt that it suddenly, really suddenly, tasted horrible! So I guess I had finally had enough by then. I found that a number of mysterious symptoms which my doctor had dismissed (at least the ones I'd mentioned to her) cleared up also. Not sure I can remember them all but they included a "skippy" heartbeat, lower legs that were very cold and ached at night when trying to go to sleep, morning headaches which went when I ate. I definitely needed more than a little sprinkle of salt on my food and every once in a while I realize it's starting to happen again so I have a little dose of plain old salt. It never tastes bad in those moments.... I had taken the salt container off the table decades earlier. I cooked with less salt than recipes called for. I didn't add it to my plate. All that has now changed. I horrify my friends when I salt my lunch when we eat out! Oh yes, the other important symptom. My blood pressure, always low, had started to creep up, and sometimes very close to the worrying level. That returned to normal. And my doctor did check my sodium one time maybe a year ago and it was normal so all the extra salt has definitely done me no harm.

This is by way of telling you it would be better to take in more sodium and stay on pred than switch to naproxen which can wreck your stomach and probably won't work well for PMR anyway.

JanetT58 profile image
JanetT58 in reply toHeronNS

Yes I’m worried that my PMR is just going to get worse.

nuigini profile image
nuigini in reply toHeronNS

I'm also one who get to add a little salt to my food at the dismay of others. My sodium levels have hovered at, or slightly below, normal for more than a decade and certainly before PMR and prednisone came into the picture. I've had many tests and procedures trying to determine why, but with no result. In the meantime I get to eat salt quite happily.

PMRpro profile image
PMRproAmbassador in reply tonuigini

But then, although the normal range for sodium is pretty narrow and critical, 2.5% of the population will still have levels that are just marginally below that critical normal range.

nuigini profile image
nuigini in reply toPMRpro

How interesting.

SnazzyD profile image
SnazzyD in reply toPMRpro

Doesn’t Pred make one retain sodium instead of lose it?

PMRpro profile image
PMRproAmbassador in reply toSnazzyD

It should - but there are always exceptions.

SnazzyD profile image
SnazzyD in reply toPMRpro

Perhaps it gets stuck in compartments that are not useful.

HeronNS profile image
HeronNS in reply tonuigini

What I was told by the person who recognised my problem and have since read elsewhere is the body has an inbuilt ability to know when it has got enough salt - unless it's hidden in processed food. Animals seek out salt licks and, like animals, if we get our salt in a way we actually taste it we also will know when we need it and when we have had enough. Sugar doesn't work the same way. I think in general the more sugar we consume the more we crave it. Salt is different, as shown by my experience with the amazingly sudden switch from enjoying lapping up grains of salt to total abhorrence!

I don't eat processed foods, and very few even healthfully prepared baked goods and other treats. I pretty much know every ingredient which passes my lips. At the beginning of the salt tangent of my journey I calculated how much salt I was normally taking in on an average day, and it was probably less than half even the current lowball recommendations are. I tried overestimating and even so it was only around 900 mg; recommendations are for slightly over 2000 mg. Someone who eats out a lot, especially fast foods, or buys prepared foods is almost certainly getting too much salt and it's those people who are the focus of campaigns to reduce salt intake. But I thought the campaign was directed at me, too.

in reply toHeronNS

I’m a salt too low person so add freely for taste. No cause known.

HeronNS profile image
HeronNS

The other thing about that "taper" plan is it doesn't take into account whether your adrenal glands will bounce back so quickly.

Blearyeyed profile image
Blearyeyed

Were you told this by your GP or a Rheumatologist?

Did they give you any other tests to confirm that you sodium problem is caused by steroids rather than other health causes?

I , like Heron , have had low sodium which added to my neuro / cardio symptoms at times , I was also just told to take extra salt , then given salt tablets , I wasn't told to stop taking my steroids or reduce them quickly because of it.

If they believe this problem is steroid induced and needs sorting out so quickly they should be offering you a more appropriate alternative , or steroid sparer, to help you rather than Naproxen which doesn't work for PMR , if it did we'd all be on it.

I think I would be requesting some more explanation about their choices , proper checks in case anything else was causing the low sodium which had an easier solution , and suggestions for some better medication alternatives if they are convinced you need to come off Pred so quickly.

Keep us updated about what you discover.

JanetT58 profile image
JanetT58 in reply toBlearyeyed

Thank you it was the doctor she looked back at my records and noticed I have had it before however last time adding extra salt to my food helped. I will make an appointment if the Polymyalgia flares which I fear it will luckily I can usually get a same day appointment

Megams profile image
Megams in reply toJanetT58

~And if your PMR flares JanetT58 you will require a higher dosage - more than what you needed before - not a win win situation.

JanetT58 profile image
JanetT58 in reply toMegams

Yes I know not sure what I can do other than follow doctors instructions then go back if any problems

Megams profile image
Megams in reply toJanetT58

~I'm sorry for you JanetT58 - that seems rather harsh. There are others on here who might make similar comments but I am not sure our Dr's get things right .

Good luck with the days ahead - we are always here ~

JanetT58 profile image
JanetT58 in reply toMegams

Thank you

Blearyeyed profile image
Blearyeyed in reply toJanetT58

You could stay as you are and get another appointment , explain that you realise you shouldn'tt take both together and are not comfortable reducing so quickly without any extra help while you do it , it without knowing that it's definitely the Steroids that are the cause , and ask if it's possible for you to be put on a steroid sparer to help instead of the Naproxen.

You could also ask to see what other checks they can do for causes of the change in Sodium , and if you can have salt tablets or sachets to see if this will solve the problem first before you possibly put your Tapering in jeopardy by going down too quickly when it may not be necessary.

You need to feel confident with what they want you to do , not just feel forced to comply to it , especially if there are other options.

As Megams says , there is a possibility that if your PMR is still active it will Flare , you would have to possibly increase your dose of steroids to cope with it , and that would be counterproductive .

Good luck with it

PMRpro profile image
PMRproAmbassador in reply toBlearyeyed

Not sure a steroid sparer would achieve anything much at this stage as they can take months to achieve a significant impact and are really for use where a patient is stuck at high doses. At this stage the limiting factor is likely to be the adrenal component - and that is what concerns me most as low sodium is also part of poor adrenal function and if the adrenals don't kick in the sodium depletion is likely to get worse rather than better. I just feel it is wrong to assume it is the pred - there are other things it could be.

Blearyeyed profile image
Blearyeyed in reply toPMRpro

I agree I think they have assumed that removing the steroid will be a quick solution when it's only likely to be a part of the problem , and may not be the part that needs most attention.

The adrenals need more investigation first in my opinion , like you say , if it is caused by Adrenal Function not taking over the role of steroids yet , rushing down the dose may make matters worse .

I get concerned when I read inappropriate prescription choices like this , off the cuff without much thought , they ring alarm bells to me that the person making the choices really doesn't have much comprehensive knowledge about the problem they are dealing with.

I'd be getting a second opinion or asking for a Specialist referral before taking this advice really.

PMRpro profile image
PMRproAmbassador in reply toBlearyeyed

OH was in hospital recently and one of the senior doctors decided he could get his BP back up quicker by stopping his diuretics. Very likely - but the result was that the right heart failure the diuretics manage pretty well got the upper hand and his lungs got bunged up with fluid. Luckily OH realised very very quickly what was happening and called a nurse to demand his tablets. But a less informed patient probably wouldn't have argued about it. Just because altering one thing seems an easy way out doesn't mean it is the right one ...

HeronNS profile image
HeronNS in reply toPMRpro

Is he recovering now? 💐

PMRpro profile image
PMRproAmbassador in reply toHeronNS

Improving - but just had a dose of gout! Because he "forgot" his allopurinol tablets for 3 days ...

HeronNS profile image
HeronNS in reply toPMRpro

Sigh. I don't think when I agreed to this life that I also agreed to have to spend the majority of my declining years looking after the body, was it St Francis who called the body "Brother Ass"? Isn't this the time of our lives when we're supposed to be concentrating on the spiritual, not the physical?

As usual these days I've just spent an hour after breakfast online and have only this minute remembered that I forgot my pill!

PMRpro profile image
PMRproAmbassador in reply toHeronNS

The downside of "progress" - without it you would have been dead long ago and saved the joys or otherwise of old age ...

in reply toHeronNS

It can be so easy to get distracted when you do a post breakfast forum check. I get distracted from tasks so much all day really. I forgot my 5mg of pred one night a couple of weeks ago and wonder why my legs were so stiff and painful. What are you down to now heron?

HeronNS profile image
HeronNS in reply to

Well I'd hoped to be down to .5, tapering to zero, but it appears to be 1. Can't complain, not really!

in reply toHeronNS

That's good really. It might just be your sweet spot.

JanetT58 profile image
JanetT58

She did mention that the steroids could be masking something else. I will have to try it and see how I go thank you

JanetT58 profile image
JanetT58

Yes thank you I will ask to be referred if I have problems which I fear I will

Sandradsn profile image
Sandradsn

I was put on Naproxen a month before the pmr diagnosis. It did nothing for the pains I was getting in my legs,hips and arms.I was then given steroids and the pains went in 48 hours.

PMRpro profile image
PMRproAmbassador

For goodness sake - whose idea is that? Apart from any other consideration naproxen rarely helps PMR so unless she is saying "this isn't PMR after all" it is a bit pointless.

Then the question: How long have you been on pred? If you are down to 5mg then I imagine some months so your adrenal function will have been suppressed and you are likely to need rather longer than 4 weeks to reduce to zero without a risk of an adrenal crisis.

However - before they force you off pred they should be checking your adrenal function because secondary adrenal insufficiency can cause low sodium levels. Taking you off pred, without knowing your adrenal function is asking for trouble if it isn't. It may not be the pred doing it per se - it may be not ENOUGH corticosteroid.

How low IS your sodium level? Have you any symptoms that could be attributed to it?

JanetT58 profile image
JanetT58

I was down to 1mg and had my cortisol checked at same time as sodium which was fine I then put myself back on 5mg about a month ago. She didn’t say it’s not PMR but wants me to manage my PMR with Naproxen instead of Prednisolone I will be going back as soon as I have any problems which i suspect be long . Thanks for you reply

PMRpro profile image
PMRproAmbassador in reply toJanetT58

She may want you to manage it with naproxen - I suspect it will be a first! They panic about pred irritating the stomach and causing gastric bleeds. But happily dish out long term NSAIDs ...

Pisco profile image
Pisco in reply toPMRpro

Enteric coated RAYOS (Prednisone) Delayed-release tablets are easier for stomach than regular Prednisone. (Haven’t caused gastric issues for me)

Mfd for Horizon Pharma USA, Inc.

Lake Forest, IL 60045

PMRpro profile image
PMRproAmbassador in reply toPisco

Rayos/Lodotra are NOT enteric coated. The coating is designed to disintegrate in the stomach after 4 hours depositing the entire dose at once just 4 hours later - that is why it is important to either take it within 3 hours of a main meal or together with a substantial snack of bread and cheese or ham - a typical German evening meal.

S4ndy profile image
S4ndy

I had years if "managing" my PMR using NSAIDs. I tried Naproxen, Ibuprofen and Diclofenac, not all at the same time. None of them helped the PMR and only Diclofenac helped my osteoarthritis. Prednisolone was then the only and best treatment for pmr. 75% better in 24hours. However, almost 4 years later, my Rheumy is currently treating my osteo with painkillers as now I am on 3g of pred my osteo pain is considerably worse. He is planning to prescribe a NSAID after doing some more tests and imaging to check on the osteo as he thinks it could be another autoimmune condition. NSAIDs have their place but in my opinion not for PMR. My Rheumy said that usually you shouldn't take high doses of Pred together with NSAIDs but in some cases its OK if the pred dose is very low. Hope you get sorted out xxx

HeronNS profile image
HeronNS in reply toS4ndy

You need to know that nsaids interfere with cartilage regeneration so, although they supply short term relief, in the long run they add to the problem. I have extensive OA and never take painkillers for it. I've had it for over thirty years and it's in my hands, feet, spine (lumbar and cervical) and now starting in my knees. I take glucosamine daily (double the recommended dose) plus a complete B complex as for some reason taking Vitamin B6 as recommended somewhere seemed to help. I maintain range of motion through a large suite of exercises prescribed by GP and physios.

Btw apparently pred also interferes with cartilage regeneration, so my early days on pred may have undone a lot of my good work over the previous decades. Certainly the OA seems worse now, but then I am in my 70s.

Linny3 profile image
Linny3

seems like a a really bad idea. my dr. tried to substitute a few mg. of pred for a nsaid and the results were awful.

PMRpro profile image
PMRproAmbassador in reply toLinny3

You mean use an NSAID and a few mg less pred?

Linny3 profile image
Linny3 in reply toPMRpro

yes that is what he had me do last year.

PMRpro profile image
PMRproAmbassador in reply toLinny3

Why? A couple of mg pred at any level is associated with fewer adverse effects than adding in an NSAID to a marginally lower dose of pred. The combination is not recommended.

JanetT58 profile image
JanetT58 in reply toPMRpro

I think I’ll make another appointment

HeronNS profile image
HeronNS

An earlier post describes what she was going through at the time. (Your question triggered my curiosity too).

JanetT58 profile image
JanetT58

I was having a lot of arm pain and generaly feeling unwell my sodium keel was low at this time she checked my cortisol which was fine I think before I went up to 5 mg

clieder profile image
clieder

Naproxen is a really strong Nsaid and, like all of them, can cause sudden gastro problems. It started a whole range of esophagus problems for me, some of them acute and severe in nature. The "treatment" for bursitis turned into a nightmare. Just be aware if you are not typically a Nsaid user.

In general, you have questions and they need to be properly addressed by those who are directing your treatment. Seems those would be better answered before you act than after? Good luck and let us know.

JanetT58 profile image
JanetT58 in reply toclieder

Thank you will do

daworm profile image
daworm

im tapering down right now, I'm stuck at 1 1/2 and often have to go up a couple of mg's of pred and I also take Naproxen mostly before bed so I can sleep for more than an hour at a time....helps with all the other aches and pains I had before PMR...prednisone certainly helped with some of that OA and other muscle aches and now that I'm down at a low dose they've all come back like old friends...

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