NSAIDs or not?

[Nanapat12]

I’ve just been reading the information on the PMR-GCA website and in the FAQs it says not to take NSAIDS yet my Dr prescribed Naproxen 500mg twice a day. I’ve found paracetamol not to be effective enough on its own. Can anyone advise please?

[Hidden]

Hi nannapat12

Both pred and nsaids can cause havoc with your stomach lining. I have occasionally had to take both because of non pmr pain and found I they caused stomach pain if taken for more than a day or two. I now take gastric resistant pred which helps and only take ibuprofen when absolutely necessary. If it is a joint or muscle that is non pmr related (I have OA and fibromyalgia too) I use the gels VERY sparingly. You can take a Ppi to counteract tummy issues but the side effects long term can be bad. Don't know if that helps.

[Nanapat12 in reply to Hidden]

Thanks for sound advice. Don’t think naproxen was doing anything anyway so will stop takingas don’t want to make other problems

GP did mention GI effects of pred and possibly of ppi in the future but still seemed happy for me to continue on naproxen.

Not too sure that his is a ‘patient centred holistic approach’. I may ask to see another GP at the practice who discusses options along with my thoughts/feelings rather than telling me what to do

Thanks again for helping me navigate this journey

[Hidden in reply to Nanapat12]

No problems. Get them to prescribed coated aka gastric coated pred. Saves Ppi in the future. Sometimes they grumble but hold out. They come in 5mg 2.5mg and 1mg so covers all tapering options.

[Nanapat12 in reply to Hidden]

Would be a good idea but I know from work that ec pred not prescribed here. I know it’s early days for me so I will continue to seek your sage advice and see how it goes

It’s lovely to have such a supportive group that really know from experience what they’re talking about. When I’ve told friends family of diagnosis no one has heard of it. Lots of learning to do 🤔

[Hidden in reply to Nanapat12]

Have you given them the hand out that dorsetlady provides. It really helped my family and friends understand a little bit. There are lots of people on the forum who have experience of lots of aspects so if in doubt ask. I couldn't have managed without the support of the forum.

[Nanapat12 in reply to Hidden]

Yes have found Dorset ladies hand out and will be sharing with friends and family thank you

Apart from a brief brush with cancer I’ve been lucky enough to get through the past 60 years with no Long term conditions so this is hitting me quite hard. Have learnt that denial doesn’t work and will now take on advice on rest -think I have a lot to learn so please be patient with my questions 👍

[daworm in reply to Nanapat12]

denial doesn't work but for sure we all go through it...I did and still do at times...this forum is great for info and support..

[Lee1945 in reply to Nanapat12]

My GP refused to give me coated pred but when I saw rheumstologist he prescribed them for me

[Leilagirl in reply to Hidden]

Such good advice thanks

[Hollyseden]

Before I finally got pmr diagnosis, doc had me on Naproxen and cocodamol, which did no good for pmr 😒 When I started on pred, he stopped the naproxen and now I just take cocodamol as and when needed. Don't know if this helps you.

[Pongo13 in reply to Hollyseden]

I'd rather give birth than take cocdamol. Not very helpful. Just saying. Good luck to you as that drug mix nearly finished me off when I broke my pelvis. Unpleasant to say the least. Hope you manage to enjoy Easter despite this.

[Pongo13 in reply to Pongo13]

And of course I replied to both of you with one message......(I'm tired. Sorry!)

[Nanapat12 in reply to Pongo13]

I thought I was having a stroke when I took co- codamol for toothache - never ever again for me either 🙀

[Hollyseden in reply to Pongo13]

Sorry to read your reply. As I said, I now only take cocodamol occasionally, when I have a pain that is non PMR related. Before finally getting diagnosis of PMR however, I was taking it and Naproxen 4x daily. Didn't get much relief from it, but blindly carried on following docs orders because I feared I would be even worse without them, and I was bad, in agony dressing, showering, walking, sitting, you name it. We all know what it's like. Sorry you had such a bad time with it. I'll just keep my fingers crossed that I had a lucky escape 😓 Oh and Happy Easter to you too.

[Nanapat12 in reply to Hollyseden]

Happy Easter to you all x🐣

[daworm in reply to Hollyseden]

some people absolutely can't handle any pain meds like cocodamol or Norcos...anything opiate related or codeine related, others find them of great help...some are just terrified of the word "opiate" as if they will immediately become heroin junkies or something....people who really need such meds and are reliant on them are having a very hard time getting them prescribed now here in the states...its not right..suicides, people having to live with pain that was once helped by these meds..."the war on drugs"...yah...it's off the rails and isn't working...BUT..some, like my wife, absolutely can not take them...me, they help at times, certainly not everyday....these statements that "those don't work with PMR"..well sorry but they do ...at times...for me....perhaps its the OA that I've had for years but whatever...

[Hollyseden in reply to daworm]

As I said I don't take it regularly now but do find cocodamol now helps with back pain I've been getting on and off for years. Pred is sorting out the PMR 🤞 just need to master this tapering lark.😊

[AmberAliona in reply to Hollyseden]

I too take Co-codamol for my PMR...it certainly helps my headache and neck pain. Doesn't do much for the rest of it. However, it helps me to sleep when things are bad.

[Nanapat12]

Thanks it does

Unfortunately Paracetamol not effective at moment and I’m allergic to co- codamol so will have to find something else

Just another thing to think about 😜

[HeronNS in reply to Nanapat12]

Is the extra painkiller for something besides PMR pain? Because pred is our painkiller. I've always used aspirin for headache, and am very careful never to take it within a few hours of pred dose, even if it means delaying one or the other. Yoghurt is excellent for lining the stomach and helps with aspirin as well as pred. In the past I've had a couple of gastric bleeds, one from naproxen, so I'm extremely careful.

[SnazzyD in reply to Nanapat12]

If it’s PMR I doubt cocodamol will work either. That was one thing I noticed with my GCA, nothing touched it but Pred was a miracle pain killer. So either the dose is not high enough or it isn’t PMR or something else is in the mix on top of PMR.

[Nanapat12 in reply to SnazzyD]

On 15mg Pred since Tuesday - guess pain better overall but not gone completely Still struggling with pacing myself - can definitely feel the difference when I’ve overdone it 🙀

Back to GP on Tuesday to see what he says

In meantime guess I’ll give painkillers a miss as not having any effect anyway

Thanks again oh wise ones 👍

[SheffieldJane]

Pred and NSAIDs are harsh on the digestive system. So it’s a double whammy. My husband’s muscular skeletal pains are helped by paracetamol and codeine. They give me constipation. PMR and GCA Pain is only helped by Pred. Pain from other conditions depending on the severity, can be relieved by Tramadol, but then you are in Opioid territory. Everything has it’s downside. NSAIDs can actually cause real damage with Pred attacking the lining of your stomach. Your doctor should perhaps think again for your pain relief.

[SnazzyD]

My other concern with it is the increase of the tendency to bleed with Pred, especially above the rock bottom doses. NSAIDs like aspirin, Ibuprofen, Naproxen etc affects platelets needed for clotting. If Pred makes me bruise, I don’t want another drug fanning the flames. Please correct me anyone who knows what they are talking about!

[PMRpro Ambassador in reply to SnazzyD]

With you all the way Snazzy!!! I recently had a week of infusions of a high dose NSAID for severe back problems, initiated by my rheumy. I was terrified, he was quite blase! It worked but when the trochanteric bursitis then had the upper hand and he offered me the choice of more infusions (attending hospital for 2 hours daily), oral NSAIDs or steroid injections I opted for the steroid injections - much to his surprise. One injection each side, took about 20 mins, and in under a week I was totally pain-free. I am still waiting for the bruising from that week of NSAIDs to fade and it isn't usually a problem I have!

[Nanapat12]

That may explain rubbish bruising from bloods being taken - hadn’t put 2 and 2 together doohh!! Phlebotomists at clinic all blaming each other!!

[PMRpro Ambassador in reply to Nanapat12]

The ones who did my infusions the other week varied a lot - one was superb and not a bit of a leak, the others pretty average to put it kindly! It can be done - but not if you are lazy about it.

And I forgot to say - I was ordered to use a PPI for stomach protection. I don't normally.

[SnazzyD in reply to Nanapat12]

When I used to take bloods, I used to treat those on Pred the same as warfarin takers and recommended a minimum 5 mins pressure on a straight arm, to avoid bleeding afterwards.

[PMRpro Ambassador]

If Naproxen (or paracetamol come to that) is helping your pain - I would suggest it may not be PMR pain. If it isn't helping the pain - why take it? The bumpf says it is "less gastro-irritant" than other NSAIDs but less isn't the same as not. I use no pain-killers as a general rule except the odd single dose for a headache. I use pred as my PMR painkiller - that is the idea. You combat the inflammation properly - and there should be minimal pain.

[piglette]

My GP tried to prescribe Naproxen when I had sciatica and I mentioned that I should not take them with steroids, she was a bit embarrassed and burbled on about taking them for a short time with a PPI. I didn’t in the end. If you want Naproxen for PMR forget it, it does not work anyway and your doctor should not be prescribing it.

[Estellemac]

Hi Nanapat12

I take 2x 500mg Naproxen and on Pred (various mg depending on flare ups usually 7) as each works on separate conditions. I have 30mg Lanzaprozol as a PPI. It works for me to protect my stomach. If I don’t take the nasaid I feel the effect straight away. The DR took it off prescription and I had to ask for it back as he hadn’t taken the OA in to account. If I could I would stop it. Co Codamol or Morphine didn’t work for the Arthritis when I was waiting for my hip operation. But we’re all different. I thought it was a bit more habit than need till I stopped them.

[Debbiecoops]

Hi Nana pat . I had exactly the same experience as you. I've been suffering with osteoarthritis and prolapse discs for a while. But got really poorly last year with polymyalgia rheumatica. My doctor put me on 15mg a day and I felt better but not 100% . After 2 weeks she told me to stop taking them because she was now doubting her original diagnosis. I stopped then for 6 weeks, which took me up to my next appointment with the rheumatologist. But I was really poorly and by the time I saw my rheumatologist had developed giant cell arteries. My blood tests showed high inflammation and low vitamin D . My rheumatologist put me straight back on pred at a higher dose of 40mg a day. This helped more than before but I feel the effects wearing off but the afternoon. I have an appointment with the rheumatologist at her gca clinic next week to see how I'm getting on . But to be honest I sometimes have to take more pred in the afternoon otherwise I'm in a lot of pain . 🤕

[Singr]

Excuse my ignorance but what are NSAIDS? And Ppi. I know some folks are from other countries and medication has different names. Personally I have been given Prednisolone, Omeprasole, Alendronic acid. Down to 9mg and feeling slight muscle fatigue and a bit clunky. I can feel my body when I move basically. I heave strong fatigue spells during day. I take Turmeric but notice no difference from it. Going from taking no tablets at all to taking all of this I’m worried about the long term health issues.

[SheffieldJane]

Non Steroid Anti Inflammatory Drugs.

Remind us when we use initials, you are not the only one who gets puzzled.

[Nanapat12]

Sorry for abbreviations. PPIs are proton pump inhibitors which reduces the amount of acid produced in your stomach thereby offering protection from bleeding or ulceration. So in your case that’s omeprazole also regularly used lansoprazole . NSAIDs would be ibuprofen naproxen ketoprofen.

[SusanEleven]

Before my pmr diagnosis I tried ibuprofen for the pain. It did nothing. Prednisone worked dramatically well.

The prednisone also masked my osteoarthritis. As I reduced steroids over the last 2 years those pains became apparent again and I added daily ibuprofen which helped somewhat.

I struggled to slowly taper from 4mg prednisone to 3mg.

My rheum doc said to return to 4mg and see if it helped. She said she’d much rather see me on a bit more prednisone than daily ibuprofen. I went back to 4mg and it worked! I haven’t needed any ibuprofen since. We’ve put off any further tapering for now.

[HeronNS in reply to SusanEleven]

As nsaids interfere with collagen healing it's not a good idea to take them for OA so I'd say your doctor is very wise. Just work on keeping your bones well nourished and you should be on the path to better health!

[BonnyQuine in reply to HeronNS]

Grateful for this info. Know it really, but need reminding. Thanks.

[PMRpro Ambassador in reply to SusanEleven]

What a wonderful rheumy!!!!! I've been saying that for about 6 or 7 years - 1mg more of pred is not going to do any harm while ibuprofen and friends reall can!

[daworm]

my Dr. said, "maybe occasionally"...I take a Mobic once in a while or an occasional ibuprofen, but with food and hours away from the Prednisone.... mobic (meloxicam) is not over the counter but its one of the least likely to harm the stomach...I don't know about what your told to do....goes against what most "experts" recommend...but then again if your having no problems and it works....??

[piglette in reply to daworm]

Why is your doctor suggesting taking NSAIDs? Is it for something other than PMR? If you are taking them for PMR they really are pretty useless, pred is the thing to take. If it is for arthritis or something else other than PMR that is different although it is suggested that steroids and NSAIDs should not be used together as others on this thread have mentioned.

[daworm in reply to piglette]

take my pred every day as instructed...as I stated, I take my Mobic OCCASIONALLY as needed, on really bad days...I took Mobic for OA and bad back, off and on for years as I have worked heavy construction/manual labor type jobs my whole life...im worn out!! swing a 16 lb sledge hammer for 8 hours!! that stuff that hurts then hasn't gone anywhere, just taken over by the evil PMR...my way may not be anyone else's way to do battle..to each his own....HAPPY EASTER EVERYONE!!! and don't let anyone pull an April fools joke on you!!!!

[BonnyQuine in reply to daworm]

Happy Easter to you too.

[PMRpro Ambassador in reply to daworm]

"mobic (meloxicam) is not over the counter but its one of the least likely to harm the stomach"

So the manufacturers claim. Personally - I don't believe them.

[daworm in reply to PMRpro]

exactly, thats why I said "not over the counter"..haha...none of these are good for you, Prednisone, mtx, the biologics, all not natural, but lets see anyone fight these diseases without at least some of them...person has to choose what to use, what works for one won't for another...except the Devils tick-tacks, prednisone, thats a given for PMR...

[PMRpro Ambassador in reply to daworm]

My point was less that we don't need drugs - it was that the manufacturers claim that Mobic is better than other NSAIDs - when I seriously doubt it is. However - ibuprofen and paracetamol (not an NSAID) are both OTC and can kill you just as well as any prescription painkiller. Mobic has been polishing a halo that just might slip round its neck...

[Estellemac]

Hi all

I have now decided to accept all the advice and guidance I have read here and given up Naproxen. I first gave it up when on a low dose of Prednisone. After being diagnosed with PMR the Pred disguised the Osteoarthritis and pain in my lower back due to two protruding discs. 10 months in to PMR I was ill advised to slowly come off it which I did. Everything came back with a vengeance. I wanted Naproxen back too as the suggested restart was 10mg of Prednisone which didn’t work on the collapsing hip problem or discs. Back up to 20 mg Pred now and off Naproxen as I feel much more in control of my health. Thanks to PMRpro Dorsetlady and Sheffieldjane to name a few of those who understand the conditions of PMR and GCA better than I do.

My DR seemed more up to date with the condition yesterday and also the impact it has on my Arthritis. I see a way forward now. I do take Duloxcetine though as that helps with the discs but it not destructive like Naproxen or Non Steroidal Anti Inflammatory drugs.

Thanks Nanapat12 for highlighting this and helping me revisit the issue.