NSAID risks

I was put on celecoxib when I was diagnosed in 2009 and found it to be effective in managing pain. In 2014, my GP surgery called me in and asked me to have some tests on my heart as celecoxib can be associated with heart problems. Everything was fine and my rheum wrote to the surgery stating that my risk was higher than a healthy person but still low enough to not need to come off the drug. Regardless, my GP surgery refused to continue to prescribe and I went onto naproxen. My GP said this was much safer. It appeared to be working for me with no side effects, so I've carried on in my daily life.

I saw rheum nurse last week who was so concerned, that she rushed into rheum's clinic and asked her opinion. They have now decided that my dose is too high and I'm putting myself at an increased risk of a stroke and heart disease. They asked me to drop the dose and see if I can manage. I'm barely managing as it is! I've been referred for another ECG, more bloods and a lung function test. I should mention that I have been very short of breath over the last 8 weeks, so I can see the concern but it's very unlikely that, at the age of 27, I have any heart or lung problems.

I am quite confused really because I seem to be getting different opinions at different times. First, I'm told that my heart risk is low, then it's a worry. Rheum and GP surgery don't seem to agree with each other and certainly not at the same time. I would like to be able to make an informed decision about taking NSAIDs and their risks, both short and long term, but I can't seem to get a straight answer.

7 Replies

  • It's frustrating when our medical professionals decide to take something away that works for us isn't it but of course they, in the main, are doing it for our own good. I was asked to reduce my etoricoxib (same NSAID group) to only as necessary by a Registrar which I found nigh on impossible so I asked my Rheumy at the next visit 6 months later if I could start taking it more regularly. Her response wasn't exactly one I expected, she said all that was required was a full CV check to make sure all was well to continue on it & her Registrar should have checked with her & she would have told him so. It might not have helped that he also told me to taper my maintenance dose steroids at the same time, you can guess the rest!

    Anyway, I had the check & all was fine except my cholesterol level was raised & being higher risk I was started on a statin but otherwise ok enough to carry on taking my etoricoxib. I was asked to try my 90mg on alternate days & if I needed more to go back to daily but I've found I can mostly manage taking it every other day.

    How about putting it to your Rheumy that you try your celecoxib alternative days, dependant of course on the results of your latest round of tests?

    By the way I've had celecoxib & meloxicam, both worked for me for a good while before changing to etoricoxib but naproxen did little for me for either RD or used as an anti inflammatory for something else.

    I hope you're able to continue on it or your Rheumy offers an alternative which does work for you. x

  • Celecoxib was working so well for me, I'm gutted that they won't prescribe it. My rheum felt the high cost of the drug was swaying my GP surgery in their decision to not prescribe it. Naproxen isn't working anywhere near as well.

    I have a full cardiovascular check up once a year as per my surgery's protocol which is obviously very good but I can't help but think everyone is worrying unnecessarily when I am making an informed decision.

    Thank you. :)

    I don't get any interaction with rheum outside of my 6 monthly appts but rheum nurse is great, so I might phone her again and bring it up.

  • COX2 drugs, like celecoxib, were treated like the Holy Grail when they first came on the market. Like so many other things, they were supposedly going to revolutionise the treatment of inflammatory diseases because they reduced pain but had less of the stomach related side effects of the older NSAIDs - ibuprofen, naproxen and the like.

    Once they were on the market and widely prescribed, it became apparent that they were causing unexpected levels of cardio vascular problems. Questions were asked about whether the testing process had been fudged just to get them on sale because of the huge profits to be made out of painkillers. I was nursing elderly people at that time and prescribing was severely curtailed in that population.

    The experience of COX2s led to re-examination of the older NSAIDs. This demonstrated that they too had a connection with cardio-vascular risk, but probably less than the COX2s. Ideas about acceptable dosages were dialled back a bit. (To give you an idea....in the early 1990s I was prescribed 600mg ibuprofen, 4 times a day for what was actually RD but was attributed to nothing more than mechanical strain at that point. I took those 600mg horse pills for months on end. :) You'd struggle to find a GP now who would allow more than 400mg, three times a day.)

    As with everything, risk is relative. Having inflammatory disease increases your cardio vascular risk over that of the general population. Here in Scotland, GPs are required to use a specific cv risk screening tool with all RD patients. The tool itself calculates when you need to be re-evaluated, along with ascribing a cv risk category & any other interventions going along with that.

    With the cv risks of these drugs in mind, there is a school of thought which says we have painkillers in RD the wrong way round. In general, if their stomach tolerates them, people tend to take NSAIDs/COX2s chronically and use opiates for acute exacerbations. Some doctors now suggest we should do the opposite and dose chronically with opiates, keeping the others for acute episodes. Not sure if we will ever get to the end of that debate as there are pros & cons on both sides.

    Perhaps a useful thing for you would be a work up that included BP, weight, cholesterol profile etc and related attribution of cv risk using a screening tool, which would be based on the facts of the testing (and therefore less open to different interpretation by different people.)

    Ultimately, with drugs other than DMARDs, the responsibility should anything go wrong lies with the GP as the prescription is his call, but the consultant, with their specialist knowledge, does have a duty to advise.

    I always found NSAIDs were the best painkillers for me. It's just unfortunate they do nothing for the underlying disease process. Now I'm in a position where my stomach refuses to deal with them along with MTX - and of course MTX is king. As a result I eat dihydrocodeine & tramadol like sweeties. :)

    I hope your assorted doctors can talk to one another and sort out something that works for you.

  • This is a very interesting Livingston. It explains why my GP (Scotland) refused to prescribe me Cox 2 recently when naproxen was giving my guts too much jip and I asked for Celebrex - having read about it here. He explained, almost word for word, what you've explained re his practice protocol on these anti-inflammatories re CV risk and RD/ inflammatory disease.

    I asked about this here on HU because NSAIDs have always been more effective for me in terms of pain management than co-codamol. I was too nervous to try tramadol or dihydrocodeine until recently when, like yourself, I've been popping them with Prednisolone like there's no tomorrow. The main problem for me with opiates is that they make me sleepy and are so constipating. But Lactulose, Senna and plenty of fresh fruit and veg seem to work pretty well on that front and these analgesics don't make me bloat and clutch my upper guts as NSAIDs do so I'm won over to taking regular doses of them for now with the occasional naproxen.

    It's bad news when our medical professionals disagree. I hope they can sort their differences out in order to help you Crashdoll.

  • Livingston --- Yep, what you've just said is what they've just said. You clearly know your stuff. ;) Thank you for the very helpful and detailed reply. :)

    I'm having annual ECGs, blood pressure checks, blood tests - cholesterol and triglycerides etc and BMI monitoring. It was this that made my rheum feel that I should stay on celecoxib. Unfortunately, my GP surgery stood firm and I've been struggling along on naproxen which isn't as good.

    When I was dx'ed, I was advised to take the NSAIDs regularly and opiates PRN. It seems to be swinging the other way. Last week, my rheum nurse advised to remain 'topped up' with co-cocodamol to keep my pain at bay and use NSAIDs as and when. I, perhaps naiively, assumed that opiates should be used more sparingly.

  • You are very welcome. :)

    I think with opiates, the unwanted side effects like constipation, sleepiness and dependence tend to be more reversible/manageable than the potentially devastating effects of stroke, heart attack and gastric bleed and doctors were made to at least think about that when the real risks of COX2s became apparent.

    We are probably all guilty of assuming that because we can buy ibuprofen in the supermarket for a few pennies, it must be completely safe. Unfortunately, it isn't & neither are the other NSAIDs. Nothing is totally safe..... The risk probably becomes more of an issue for folk like you and me who are going to dose daily on these things for decades.....or at least until one of the Daily Mail's miracle cures actually turns out to do what it's supposed to. :D (I still treat myself to some ibuprofen when I'm having a bad day - hidden inside a big meal to sneak it past my stomach!)

    Sounds like they are well on top of cv monitoring for you. Maybe once you've had your lung function tests etc and they have arrived at a decision about lupus/not lupus you might get them to focus on pain. Pain clinic referral might be worth an ask?

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