When I was diagnosed with RA in 1989 , along with other medication , I was given diclofenac as a NSAID . This was later changed to Meloxicam by my rheumatologist . Which I took daily until this year .
Fast forward to May 2021 and I tripped on a step in the house and fell heavily onto my left hip . Following on from recommendation from ringing 111 , as it was so painful , I presented at A&E and had an X-ray. Apparently, there were no fractures or breaks so it was assumed “deep tissue injury” . This resolved by end of October last year .
At the beginning of March this year my left groin suddenly started to be painful . After a couple of weeks when it didn’t resolve I saw a doctor . I asked if I could have an X-ray and possibly a referral to the consultant who did my TKR in 2009 , who had also X-rayed my left hip and suggested I would probably need a THR in the not too distant future . Apparently, this is not how things work and I was given a sheet of exercise to do and told to return in 6 weeks .
As the hip pain was getting worse I rang the RA helpline and they brought forward my rheumatologist appointment by a few weeks . When I saw the rheumatologist he sent me for an X-ray and stopped my Meloxicam in favour of Naproxen . Naproxen was almost a magic bullet as the pain improved dramatically , both for my hip and my general RA aches and pains . Shortly afterwards he rang to say that the latest X-ray had shown 3 repairing pelvic fractures , one of which was a stress fracture , and asked if I had fallen . I hadn’t , and I asked if these could be fractures caused by my fall the previous May when I had hurt my hip . His answer was non committal but I do understand that small fractures can quite easily be missed .
However , I’m now coming to the reason for writing this . My rheumatologist asked me to taper off the Naproxen as it is no longer , apparently, acceptable to be on NSAIDS long term . Reasons given were problems with kidneys , liver , stomach ( although I take daily lansoprazole as a PPI for other meds ) and cardiovascular problems . My age ( 80 ) was a subtext that I recognised . I have slowly tapered off down to one Naproxen every fourth day . And have now been completely off for 6 days . The pain in my hip isn’t completely resolved and I certainly notice the absence of Naproxen on my other RA aches and pains . I’m taking paracetamol but it’s not the same . My feeling is that if I hadn’t had this last episode I would have continued long term with the Meloxicam . Certainly, no one ever suggested that I give it up at any of my medicine reviews .
Does anyone else take long term NSAIDS with their rheumatologist’s approval and if so what ? Is there an approved long term one or is this not fashionable now ? I will be seeing my rheumatologist at the end of the month and will discuss this with him . There has been no suggestion that I should replace Naproxen with any other NSAID not even my previous one . Apologies for the length - if you’ve got this far . 🥱😴🫤
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I was on diclofenac for 30 years until I moved house and my new GP wanted me off it because of heart risks so I was prescribed naproxen. I don’t find it helps as much as the diclofenac and I get reflux too so I don’t take it all the time. I’ve a rheumy appointment coming up so I’m going to discuss options with her then. Interestingly no rheumy has ever questioned my taking it before my new GP. I hope you get some answers or something that will help, it’s not nice having to change from something we find helps to something not so helpful, but you will get there.
I have had the same on moving house but argued my corner and got them back. Now pharmacists are saying not in stock and unable to get any more from the manufacturer.
I was on Diclofenac & Naproxen for about 7 years. I dread to think what they have done to my insides. I feel tons better now I don’t take either of them. I have cut out as much stress as possible and now take amitriptyline.
I'm sorry these two NSAIDS didn't work for you . I was on meloxicam for years but when it was changed to naproxen I realised how much better that was . I think taking a PPI helped protect my stomach . It does appear now though that rheumatologists aren't too keen on us staying on NSAIDS for any length of time . I have used amitryptaline before and still do find it useful for some of my aches and pains - especially when I had shingles . Good for nerve pain , I understand.
I've had NSAIDs of one type or another for the length of time I've been diagnosed, 14 years, some with success, some not so much. The one I’ve been taking longest & my current one is etoricoxib which I’ve been prescribed about 9 years. It was the COX-2 inhibitor which the FDA discontinued for cardio reasons. I have familial heart disease, both sides, fortunately I’m ok. As a result I do have annual cardiovascular checks though. Another COX-2, celebrex, (still available in the US), was one of the 2 NSAIDs I was prescribed at diagnosis, along with nabumetone. The others I've tried have been meloxicam, naproxen, diclofenac &, prior to diagnosis, ibuprofen.
The only amendment with etoricoxib has been a reduction in dose from 90mg to 60mg, with the proviso if I felt it was needed I could return to 90mg. This was changed at a meet with my GP following an EU-wide review back in 2016 re revised dose recommended those prescribed it for for RD & AS gov.uk/drug-safety-update/e... As it is I’ve been ok on 60mg though do have a box of 90mg just in case. So, as you see, I’ve been in one form of NSAID or another for 14 years, only altered if they stopped working, no other reason. Pretty long term.
Strangely, I too take eterocoxib and it remains at 90mg. I’ve been taking it since 2014.
When the NICE guidelines recommended reducing to 60mgs, by consultant said to stay at 90 as 60 wouldn’t work for me - it had never been reviewed or referred to again.
Hope you and your husband are doing as well as possible x
Thanks for that Eiram50 . There seems to be so much confusion , contradictory messages over the usefulness/dangers of NSAIDS . It's so hard for the patient , however informed we try to be . 🙄
She's the one who knows you, it's like we say to those asking medical questions isn't it?! As long as all is ticking along nicely, especially your heart, & the etoricoxib works of course, then why upset things is the thing.
You know how it is with my h Marie so to say ok isn’t ever really the truth. More investigations, been very breathless. Following a stress echo last Monday another med & another angiogram, possibly a stent required now. At least it's not invasive, that was his worst fear. Shoulder/neck probs resurfaced, upright MRI in M/cr on Friday for that. I'm not too bad, carrying on carrying on as we do. Troubled with left Achilles but otherwise ok. Thank you for asking. How are you & your girls? Any travel plans to look forward to? x
Thanks for that , nomoreheels, that was helpful . Interesting that you have tried so many different NSAIDS , including one over which there was so much controversy at the time . I think my age (80) has a lot to do with this particular rheumatologist's reluctance to let me continue with Naproxen. I can see a serious conversation coming . Thanks again .
You're welcome. If they stop working, or become reduced in efficacy, then change is necessary really. It's likely age has some influence for you as you suspect, the kidneys & of course cardio are usually the concern as we age. You could maybe ask if paracetamol with a low dose NSAID could be a consideration, the combination can work quite well. After all if there's inflammation it needs to be controlled, if there's no other alternative then what? I hope something can be sorted for you.
I reckon I can , nomoreheels, now that I've got all my ducks in a row , as they say . Thanks to all the amazing people who have taken the time to help and answer my query . What would we do without this site and all who sail in her ? I understand the concerns re NSAIDS with kidney , liver and cardiovascular risk but then surely unresolved inflammation can be just as dangerous . For which these drugs were designed , I guess .
Good. Certainly uncontrolled inflammation can put strain on them all, & the lungs too, all equally important. Wishing you a positive resolution. Will you update us please?
I've taken Diclofenac Acid (voltarol) for 32 years for OA. I was diagnosed with RA 6 years ago.
Over the years several different GPs have suggested that I change to a variety of different NSAIDs. Ive tried a few but nothing has worked as effectively as Diclofenac and I've always been able to switch back.
Times have changed.
A few years ago when I was diagnosed with RA my (new) GP suggested changing away from Diclofenac. I said no, asked my rheumatologist who at that time said best to leave NSAIDs alone until we get the RA medication established. It has not been raised again.
I believe sometimes Drs get it wrong. They have no idea what it is like to life with painful diseases. The relief Diclofenac has given me for 32 years ....half my life....and the ability to enjoy life with my children as a physically active mother has far outweighed the risks.
I would challenge your GP, many of us on this forum take NSAIDs. I hope you get things resolved.
Thanks so much for your reply Mmrr . I've tried to go without naproxen for 6 days and have become increasingly stiff and painful . So I gave in and took a naproxen- the relief has been immense . I shall have to have a serious discussion with my rheumy in a couple of days time.
This goes back to what my consultant said re drugs and side effects etc ITs the disease vs the drugs vs the side effects. So I know pred not great but it keeps me almost upright. I know co codomol has long term issues but it works and I keep it to minimum unless really needed.I hated being taken off diclofenic as only NSADI that worked and I cant get any GP to get me back on it,
It is Dee, it is always the benefits vs the drawbacks of meds and side effects. I've to come off voltarol 7 days before my MRIs, I've no date yet. I'm just hoping that we do not enter into a discussion about coming off it permanently as I've been there before on several occasions and I was nowhere near as bad as I am now.
Like you said life of pain is so not understood and those of us in the loop of pain, it's so hard to battle with the medics over what works for you. I am starting a new relationship with a new GP as mine retiring and I loved my old GP we just worked well together. Nervous about it but.........................
I was on diclofenac for five years and then on naproxen for eight. New consultant came- off naproxen it is bad for your health! Now on baricitinib until they tell me this is bad too! Let’s face it- we are putting all kinds of awful stuff into us to stop the pain. At one point I would have done anything for it to stop. RA is an unforgiving companion that is already doing damage so whatever helps me I accept. After over twenty years of RA drugs I feel like giving my body to research as it is!I was given alendronic acid tablets for my bones because of naproxen to strengthen them. Ask your gp about bone supplements. Keep well my friend 🏖
Thanks Green230461 I have given in after 6 days without naproxen and I have taken one . I have become increasingly more stiff as the days pass . Its made so much difference within an hour of taking one . So I shall be having a discussion with my rheumatologist at the end of the month .
Best of luck to you! My dad used to say to me- if your pet was in pain would you take her to the vet? Yes! Then don’t be daft asking for painkillers for yourself!Sage words indeed.
Hello.I feel for you. It's good to be able to take something for pain. I am on diclofenac daily and have been for years. Nothing works as well for me. My rheumatogist hasn't taken me off it nor my new Gp.
I take a low dose. I would be that bit stiffer without it.
Meloxicam I was told is contraindicated with methotrexate. I do hope you get relief.
Thanks for your reply Siebel12 . I have just taken a Naproxen 500mg after 6 days of going without . The relief has been immense. I was taking methotrexate when my rheumatologist started me on meloxicam , years ago . I think contraindications are often ignored or not taken too seriously. I'll be talking to my rheumatologist soon .
Yes, I've been taking a modified release NSAID for many years. First it was indomethacin and now diclomax. I have the same discussion with GP every 12 months about coming off them , but having tried many other options, I now stick to my guns and continue to insist. I'm 66 and on Mtx and Toc for the RA but the NSAIDs help so much with both RA and OA pain. I also take tramadol when required.
I have taken 1600 mg Retard every day since diagnosis 7 years ago. When I see a GP they always say you shouldn’t be on these high doses of NSAID s as stomach bleeds etc etc. I told the rheumatologist and he just said oh that’s GPs they always say that , ignore it! Recently diagnosed with PMR and now have to take steroids so I’ve come off the Brufen as I don’t need it. I feel better on the pred than I have for years but I have to start tapering now so it won’t last 🙃
Unfortunately , it's my rheumatologist that doesn't want me to stay on naproxen. But armed with all you lovely people's backing I'll be putting forward my case for . 😇
I'm another who takes long-term NSAIDS. I'm 53 now, and have been taking them daily for almost 40 years. I started with one used for under 16's called Tolmetin, then progressed to Indocid (indomethacin) for about 13 years until it caused tummy troubles. (I also had ranitidine). I then changed to Meloxicam (along with a PPI) which I took for about 21 years. About a year ago, my new rheumy swapped me to Etoricoxib 90mg as he feels that is better for the kidneys, although my GP didn't seem to agree. I do have reduced kidney function as a result of taking Cyclosporin for many years, but so far the doc tolerates me staying on a daily NSAID as I feel they made a big difference. I tried cutting down the dose of meloxicam a number of times, but always with the same result - more pain, and more stiffness. I think the attitude towards NSAIDS has definitely changed over the years. When I was diagnosed in the early 80's everyone was on them- if they could tolerate them. Doesn't seem to be the case now. Obviously as well you know, NSAIDS (like all our drugs), can cause problems. As long as my blood tests allow, I plan to stay on them. I take ADCAL for bone weakness and have a yearly bone strengthening infusion. Unfortunately I've had 12 stress-type fractures (pelvis, several in ankle, 3 in ribs, 1 in spine) and 18 months ago I fell and completely broke my femur which has been a nightmare as the bone stopped healing about 4 months post-surgery.. I had a second big op jn January, and it seems to be healing, but very slowly. I say this because one of the main reasons for my fractures is long-term steroid use. I was told though, that while steroids can hamper bone healing, so too can NSAIDS, and just having RA. The other thing I'm not sure if you're aware of with pain and osteoporotic type fractures, is as you say, they don't always show up easily on x-ray films, and also don't always start to show until several weeks later. I've fallen foul of this on numerous occasions and been sent home with fractures only for my rheumatologist to order an MRI and hey-ho, there's a feacture. Sorry, I've gone off topic a bit there, but it just sounded like you may have had a similar experience with your fractures.
Good luck with the NSAIDS. Unfortunately we have to live with balancing all sorts of unpleasant risks, don't we?! X😊
Thanks Kags for writing such a long and detailed reply - I'm very grateful .
I was on meloxicam for many years after having been on diclofenac for starters . I wasn't really aware of how much this NSAID helped , until I was changed to naproxen and then told to taper off altogether.
I wasn't sure what a stress fracture was until I looked it up - but I guess that was what caused the sudden pain and not the resolving fractures of the previous year's fall . I know when I had my TKR the consultant marveled at my poor bone quality and pointed it out to all the other surgeons who were working with him ( he told me this after the op ) .
When I first started the RA journey in 1989 , when I was 48 , I did loads of research , reading scientific papers etc to try and understand the disease and try to live my best life . Then of course real life , family and work took over and I just accepted that I had a RD which wasn't going to be cured . I took the meds , had the blood tests , DEXA scans and tried to follow the suggestions from the numerous rheumatologists that I've had over the years . Some who where very kind , knowledgeable and inspiring and those who were - well , not . I guess rheumatology isn't a particularly "sexy" discipline , so we get the full cohort of medics .
However, although I'm aware of the effects that the meds and RA have on my body , looking at my blood test results most of them are either within range or just outside the "normal" range . I think at 80 I'm prepared to take a few risks with the medication in order to live a more comfortable pain-free and stiff-ness free life , if I can .
As you so succinctly put it , life is a balance of unpleasant risk- taking in order to HAVE a life .
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