I have been using NSAIDs for pretty much the whole time since I was diagnosed. At this moment I also take leflunomide and Enbrel. I’ve been using Enbrel for nearly 2 years and leflunomide for quite a few years.
I try to take breaks from the anti inflammatory for at least a few weeks once or twice a year. I’m on a break right now, and I’m really questioning my treatment plan. Are people typically kept on anti-inflammatories long term? Is this a reasonable part of my treatment or does it indicate that the DMARD and biologic are not doing their jobs?
The Enbrel could be working for your PsA pain, but if you have damaged joints, Enbrel isn't helping that pain. I've made a practice of only using OTC pain killers when the pain is horrible. My stomach can't handle them, but I also wonder if they lose their effectiveness if used too much.
You should probably ask your rheumy that question. Maybe seeing you he'll be able to decide RIGHT AWAY if you need to switch biologics.
My rheumy doesn't want me to take NSAIDs if I can avoid it. They still appear on my rolling prescription though, as back up. I see them as painkillers once DMARDs and / or biologics are being used but maybe I'm wrong in that assumption, maybe they are useful for knocking out 'leftover' inflammation? If I was expected to take them on a regular basis I'd want to know exactly why.
Hi Stoney, I started occasional NSAIDs use 4 years ago (Celebrex 200mg) and panadol osteo 2 or 3 times daily for 4 years too. Since then the celebrex has increased to daily for past two years. I also give myself holidays prior to rheumy appointments as a way of checking how things are going. My rheumy has told me getting me off daily NSAIDs is a main driver for going toward DMARDS. His two reasons are 1. NSAIDs (well some) have more long term risk than DMARDS 2. Daily reliance on celebrex is showing the disease needs more to help manage it and the NSAIDs won't stop disease progression. So his plan is to get me off them once the right DMARD or biologic is found with just occasional use like Sybil suggests. I suspect it probably depends on level of use, type of NSAID etc so goid idea to talk with your Dr.
I think you’re right, that the goal is to knock back the leftover inflammation. I asked a few months ago about the Enbrel question, and she wasn’t thrilled with the idea of switching me out too quickly. If I go through a biologic in two years, the big picture isn’t so pretty. I could wind up running out of options sooner rather than later.
What I seem to be hearing is that people don’t tend to use NSAIDs like I do, in general.
Sybil said:
My rheumy doesn’t want me to take NSAIDs if I can avoid it. They still appear on my rolling prescription though, as back up. I see them as painkillers once DMARDs and / or biologics are being used but maybe I’m wrong in that assumption, maybe they are useful for knocking out ‘leftover’ inflammation? If I was expected to take them on a regular basis I’d want to know exactly why.
MacMac- so you aren’t on a DMARD yet? That’s my issue, I’ve been using them for seven years now, and getting progressively stronger, with the biologic added in now too. That’s what I always thought, that the goal was to no longer need the NSAID. But maybe it is a three leg approach.
MacMac said:
Hi Stoney, I started occasional NSAIDs use 4 years ago (Celebrex 200mg) and panadol osteo 2 or 3 times daily for 4 years too. Since then the celebrex has increased to daily for past two years. I also give myself holidays prior to rheumy appointments as a way of checking how things are going. My rheumy has told me getting me off daily NSAIDs is a main driver for going toward DMARDS. His two reasons are 1. NSAIDs (well some) have more long term risk than DMARDS 2. Daily reliance on celebrex is showing the disease needs more to help manage it and the NSAIDs won’t stop disease progression. So his plan is to get me off them once the right DMARD or biologic is found with just occasional use like Sybil suggests. I suspect it probably depends on level of use, type of NSAID etc so goid idea to talk with your Dr.
Grandma J- the joints are not too damaged. How do I know? I’ve had enough X-rays to show some joint space narrowing, but nothing too substantial. In that sense, we know that my treatment plan is working well overall. But I also realize that NSAID use can be higher risk in terms of side effects and long term use.
Grandma J said:
The Enbrel could be working for your PsA pain, but if you have damaged joints, Enbrel isn’t helping that pain. I’ve made a practice of only using OTC pain killers when the pain is horrible. My stomach can’t handle them, but I also wonder if they lose their effectiveness if used too much.
You should probably ask your rheumy that question. Maybe seeing you he’ll be able to decide RIGHT AWAY if you need to switch biologics.
Do you feel you need NSAIDs, particularly for pain?
I've been struck recently by the similarities I have with you PsA-wise: I toddle along okay on the whole, the fallout from PsA would seem to be secondary OA (though I don't know what I'd have to do to get imaging done, other than pay for it myself, so that could be out of date) and my disease isn't fully under control. For a while it looked like it might be but even though I now have more swollen joints my rheumy is happy for me to stay on Humira. I reckon I agree with that at this stage.
But what I do not have is a lot of pain. I have a high pain threshold and although increasingly walking is painful it's bearable. So I reckon unless you do suffer a lot with pain (and with the proviso that we are all different despite similarities) I bet my rheumy wouldn't have you on NSAIDs. Shame they can't debate the issue, that would be interesting!
Sybil- pain and inflammation. I’ve been off diclofenac for two weeks and it shows. Knees are swollen, multiple finger joints, elbows hurt, ankles swollen and painful, etc. I guess that’s part of my concern, that the disease modifying meds are clearly not enough to keep inflammation down. Clearly it’s needed for pain as well.
I feel the same way. There's always pain, especially in my feet, but today I have pain in my shoulders, neck, lower back and hips (most likely from exercising). I don't take pills for this type of pain. What I try to do is ignore it for the most part (like I ignore my ears ringing) and at night I always take one Tylenol PM (helps me stay sleeping) and occasionally take an Ibuprofen if my feet hurt to the point I feel like I need a wheelchair.
Someone once said they compare all their pain to how awful a colonoscopy was. I compare all of my pain to how awful labor was when giving birth to our four babies. Sybil, I know you mentioned once that childbirth wasn't bad for you, but for me it was the worst pain I've ever had. I honestly thought it would kill me at the time! Kidney stone pain was bad, back pain was worse, but baby pain---yuck---the ultimate! It's just that there's such a good outcome, so the pain is worthwhile--not like all that other pain!
My husband took mega pain pills--you name it, he took it. His health is not good, and I think a lot of that has to do with his use of prescription pain meds. I remember once a doctor told him he was taking enough Tramadol to kill a horse! On top of that, he had a grand mal seizure from taking Tramadol--that's when he went off it.
Sybil said:
Do you feel you need NSAIDs, particularly for pain?
I've been struck recently by the similarities I have with you PsA-wise: I toddle along okay on the whole, the fallout from PsA would seem to be secondary OA (though I don't know what I'd have to do to get imaging done, other than pay for it myself, so that could be out of date) and my disease isn't fully under control. For a while it looked like it might be but even though I now have more swollen joints my rheumy is happy for me to stay on Humira. I reckon I agree with that at this stage.
But what I do not have is a lot of pain. I have a high pain threshold and although increasingly walking is painful it's bearable. So I reckon unless you do suffer a lot with pain (and with the proviso that we are all different despite similarities) I bet my rheumy wouldn't have you on NSAIDs. Shame they can't debate the issue, that would be interesting!
I wrote you a great reply that somehow got lost along the way. I'll try to recreate... [And I'm sure you know all of this stuff already because you've read lots and been on the site for ages. But it might bear writing for those who have similar questions]
a) I was put on meloxicam recently for inflammation and pain (one pill, daily). It was added because I had been using large doses of ibuprofen but treating it as a pain killer, not an anti-inflammatory (taking it PRN instead of scheduled). I have to say that it has really helped control inflammation (and pain) not fully managed by biologic.
b) I understand you wondering if Enbrel is cutting it--it might be, it might not be. My doc added Otezla on top of Humira and meloxicam to really boost the biologic approach (I imagine meloxicam will be stopped once Otezla at 16 weeks--soon!). As we all experience ups and downs in our disease it can be hard to determine whether something isn't working as well as it used to for good, or just isn't working as well as it used to right now. The addition of Otezla was made so I wouldn't have to change biologics again.
c) if Enbrel isn't cutting it, it isn't terrible. Enbrel pooped out after 6-8 months for me, but Humira is going strong after two years (despite recent events and needing a boost due to a flare brought on, I fear, from my work travel requirements to East Asia in the summer). Because these drugs all work in slightly different ways it is really hard to predict which will work well or which will last a long time. I have always thought that the imprecise nature of figuring out if/when to switch biologics to be one of the hardest parts of managing the disease. But once my quality of life got bad enough I asked first for extra meds then for a new biologic. I imagine you'll take the same cautious but self-nurturing approach!
That seems to be my rheumy’s basic approach, of reticent to change biologics, and see if this can be ridden out. It’s good to hear that success may be better with the next one too.
The big reason that I want to be off the NSAID is that my blood pressure has been rising for the last six months to a year and the likely cause is the ipuse of NSAIDs. It may well be doing it on its own but I would definitely rather get it down without adding more meds in to the mix.
janeatiu said:
Stoney,
I wrote you a great reply that somehow got lost along the way. I’ll try to recreate… [And I’m sure you know all of this stuff already because you’ve read lots and been on the site for ages. But it might bear writing for those who have similar questions]
a) I was put on meloxicam recently for inflammation and pain (one pill, daily). It was added because I had been using large doses of ibuprofen but treating it as a pain killer, not an anti-inflammatory (taking it PRN instead of scheduled). I have to say that it has really helped control inflammation (and pain) not fully managed by biologic.
b) I understand you wondering if Enbrel is cutting it–it might be, it might not be. My doc added Otezla on top of Humira and meloxicam to really boost the biologic approach (I imagine meloxicam will be stopped once Otezla at 16 weeks–soon!). As we all experience ups and downs in our disease it can be hard to determine whether something isn’t working as well as it used to for good, or just isn’t working as well as it used to right now. The addition of Otezla was made so I wouldn’t have to change biologics again.
c) if Enbrel isn’t cutting it, it isn’t terrible. Enbrel pooped out after 6-8 months for me, but Humira is going strong after two years (despite recent events and needing a boost due to a flare brought on, I fear, from my work travel requirements to East Asia in the summer). Because these drugs all work in slightly different ways it is really hard to predict which will work well or which will last a long time. I have always thought that the imprecise nature of figuring out if/when to switch biologics to be one of the hardest parts of managing the disease. But once my quality of life got bad enough I asked first for extra meds then for a new biologic. I imagine you’ll take the same cautious but self-nurturing approach!
any chance that changing anti-inflammatory meds would help your blood pressure? Are some better/worse than others?
Stoney said:
The big reason that I want to be off the NSAID is that my blood pressure has been rising for the last six months to a year and the likely cause is the ipuse of NSAIDs. It may well be doing it on its own but I would definitely rather get it down without adding more meds in to the mix.
Ah, an issue close to my heart. Or maybe my joints. I’ve been on an NSAID for years – far before I was diagnosed with PsA. In retrospect, someone should probably have questioned my need fro an NSAID at some point. But hey, give the menopausal hypochondriac a pill! I continued after I was on Enbrel, but found that I had too much residual pain to manage. My pharmacist and my doc would like to have me off it, and so would I. But now, when I am between BIOs and feeling like Tinman, is not the time.
I’m aware that long term NSAID use is a bad thing, and when I finally get my Humira and it works fabulously for me (!) I will attempt a dose reduction, hopefully to elimination. That would eliminate the need for the omeprazole stomach protector too (those being bad drugs too, but not as bad as a stomach ulcer). So yes, I want to ditch those things!
Over the last year, my blood pressure has been rising. Is it a coincidence that my Enbrel started failing at the same time that my BP went skywards? I don’t know, but I think it’s worth considering whether TNF is somehow affecting my BP. If Humira works for me, I wonder whether my BP will sink on its own? Meanwhile, I’ve added another BP med.
I recently, by fluke, had a consult with a nurse practitioner who looked at my meds and suggested I try Cymbalta as an anti-depressant instead of Paxil because Cymbalta can reduce pain. Now why, in twenty years of taking Paxil (and having chronic pain from “osteo” – actually undiagnosed PsA) did that never occur to my GP? Don’t get me started. So I am on an anti-depressant science experiment now. Just what I need when I wake up feeling like Tinman and hoping that Glinda the Goodwitch will deliver my Humira today.
Hi all, I couldn't post yesterday so while the thread has moved on with lots of useful comments and sharing, I wanted to add a couple of comments. Stoney I am in the gap of two failed DMARDS down and possibly biologics next up. NSAIDS and steroid injections are my besties right now :-) And actually after my first post in this thread I did the maths and I first started taking NSAIDS 8 years ago with daily use for the last 4 years...losing track of time now too ha ha!!!
It's hard to work out what fits for each of us and when to change it...that's like a three-legged approach too: doctor's practice knowledge, research knowledge and individual needs. I know someone who was diagnosed 35 years ago with PsA (in their 20s). It affects a few joints. Their treatment plan is NSAIDS prescription and over the counter. They work, she is happy.
Stoney said:
MacMac- so you aren't on a DMARD yet? That's my issue, I've been using them for seven years now, and getting progressively stronger, with the biologic added in now too. That's what I always thought, that the goal was to no longer need the NSAID. But maybe it is a three leg approach.
MacMac said:
Hi Stoney, I started occasional NSAIDs use 4 years ago (Celebrex 200mg) and panadol osteo 2 or 3 times daily for 4 years too. Since then the celebrex has increased to daily for past two years. I also give myself holidays prior to rheumy appointments as a way of checking how things are going. My rheumy has told me getting me off daily NSAIDs is a main driver for going toward DMARDS. His two reasons are 1. NSAIDs (well some) have more long term risk than DMARDS 2. Daily reliance on celebrex is showing the disease needs more to help manage it and the NSAIDs won't stop disease progression. So his plan is to get me off them once the right DMARD or biologic is found with just occasional use like Sybil suggests. I suspect it probably depends on level of use, type of NSAID etc so goid idea to talk with your Dr.
Interesting- been feeling for a wee while that it’s been the naproxen that is working and maybe not necessarily the methotrexate( weekly injections). My experience is that I’m good if I take 2 NSAIDs per day. Had a spell off them recently and within a few days felt as though I was going backwards! The fatigue came back with speed. Will mention to specialist at next appointment in 3 months. Food for thought !