Just that, really... I'm seeing the rheumy next Monday, and I'm following advice given here and elsewhere to come off NSAIDs for a week before, to make sure my blood tests reflect my 'natural', unmedicated state. I'm fretting about managing my pain... Can I take paracetamol/codeine, or will they affect inflammatory markers in my blood tests too?
Thanks all!
Paracetamol has weak anti-inflammatory properties but is unlikely to affect your blood results significantly.
Using hot and cold bathing, distraction techniques and a TENS machine are all non-pharmacological methods of reducing pain. You can hire TENS machines from chemists to try them out for yourself.
I'm worried about giving medical advice here. We can share experiences but shouldn't replace doctors. I would only come off things if rheumys advise. Would you consider contacting the NRAS helpline? I hope it all works off.
Sensible advice, cathie. My issue is that my previous blood-tests have be 'normal', not showing any inflammatory markers. Several people pointed out to me that since I am on long-term Cox 2 NSAIDs, this would be lowering inflammation and possibly altering blood test results. I'm seeing the rheumy next Monday, so it's not long to do without, and it seems worth it to be sure whether or not I am in fact sero negative...
Is it long enough to have an impact? I see your point, it's tricky. I'd still discuss wth rheumys.
The half-life of this NSAID (Etoricoxib) is around 24 hours, so you're down to an 1/8th of your normal levels within 3 days, and 1/64th in 6 days...
I can't discuss it with the rheumy until I see him next week... Our hospital has had vacant rheumy consultant posts and a rapid turnover, and have been operating a 'revolving door' policy over the last couple of years, discharging people and asking them to get re-referred each time.
I figure it will prob be unpleasant to do without the NSAIDs but there's no risk - after all, it's just like going away for a week (or even a long weekend) and leaving them behind...
Sounds like you've got it worked out. I hope you get what you want.
I wouldn't say I've got it worked out but it's A plan! I have deteriorated so much in the past couple of years, and I'm so desperate to stop the deformations and other things that are happening to my body, that i want to do all I can to make sure the rheumy gets an accurate picture and I get better treatment...
Well I have blood tests monthly and I have never been told to come off until consultant says so. It would put your pain control back and symptoms worse.Can't you contact consultant secretary or specialist nurse help line
I was told when I had blood tests that NSAIDs would not significantly affect the results. Some tests look at long-term inflammation and some look at short-term (I can't remember exactly which ones) and the short-term levels go up and down anyway. I also would be very wary of taking advice from here about coming off meds (no offence to anyone). I would ring your consultant or GP.
I do think there's a difference between pre-diagnosis and post-diagnosis.
I totally agree that once diagnosed and prescribed meds to control RA, and pain and so on then you should do everything in consultation with your rheumy team, and not start or stop stuff without them. And the regular blood tests are looking at long term trends and the effect of the prescribed meds so no need to start or stop anything.
But in the run-up to getting a diagnosis, which as many of us know can be a long drawn out and frustrating process, then you have to use your own judgement about what over-the-counter meds you take. I certainly presented myself at my first appointment in a fairly miserable state as I was so desperate by then that I really didn't want anything to get in the way of the consultant seeing what I was like at my worst so I even stopped taking paracetamol that day.
Yes we should be wary of over stepping the line, but we are all adults. I certainly wouldn't bother my doc about a dose of night nurse for example!
Yes, that's pretty much my feeling helix. 
I've not stopped any of my meds since being diagnosed for regular blood tests unless instructed to do so. On the lead up to my appointment at the diagnostic clinic I was advised to stop taking the pain relief & NSAID my GP prescribed to ease my pain a couple of days before the appointment for the team to have honest baseline results, quite different.
I would leave well alone, particularly as you've been prescribed Cox-2's, if you're anything like me you'll miss them by the second day of not taking them.
Yes, that's my situation nomoreheels. I've been on a Cox-2 prescribed by the for 2 years now (Naproxen for 3-4 years before that). It's not controlling my pain adequately any more, and I think it's masking the inflammation, so making diagnosis more tricky. It seems worth a try, anyway. If I then still get normal blood test results, at least I'll know...
Cox-2's are prescribed to reduce inflammation & are not really a pain killer, not in the true sense. The aim of prescribing them is to reduce inflammation & the pain it causes if that makes sense, so in that respect it becomes by default a pain reliever? But if it's not reducing your inflammation it would follow that neither is the pain of that inflammation eased, if that makes sense? Are you confident that it's reducing inflammation? If not I would talk to your Rheumy about it, he may agree & try a different Cox NSAID, though I would hope he'll recognise whether or not you have inflammation when he performs the DAS 28. I've had a few Cox group meds over the years & etoricoxib is the one which is suiting me best at the moment.
Etoricoxib is what I'm on, nomoreheels. It def worked better than naproxen when I started it, but I have got worse over the last year or two...
I seem to have inflammation in my tendons more than my joints - or at least, they hurt more. As far as I can work out, since I've been on anti-inflammatories for years but still have joint damage, visible deformities and a small amount of visible swelling and redness, then either the dose is too low or I need something else too. So far, I am sero-negative too, which doesn't make diagnosis easy... I want to see whether my visible inflammation increases after a few days without the anti-inflammatories, which I hope will then make it easier for me to get an accurate diagnosis.
Thanks for your comments everyone, they're much appreciated.
Unfortunately anti inflammatories won't halt joint damage if you have an erosive form of RD. They can limit it by helping tackle the inflammation & in turn the pain but unless you were diagnosed & started treatment at the first signs then unfortunately joint damage may have already occurred. This is why Rheumy's generally hit it hard with MTX, HCQ or the like in an effort to dampen down the disease to reduce the risk of further damage. I'm seropositive with erosive RD so it's possible this only applies to those with this form but this is more or less what my Consultant explained to me (not word for word so I may have forgotten some of what he told me but it's what I remember).
I tried naproxen years ago when I was having endometriosis pain & also early on in treatment but it didn't help. My first NSAID was celecoxib, then meloxicam & as you know etoricoxib for nearly 4 years. Each was changed as they became less effective so as you say may need an increase or a different NSAID.
I've got rotten inflammation in my feet & ankles despite an increase in MTX & taking etoricoxib every day now instead of alternate days but I'm battling on. My wrist are inflamed tonight too but that might be due to me falling flat on my face this morning!
I hope your Rheumy is thorough & can give you a definitive diagnosis. I'm of the mind that if you know your enemy you can fight it better.
That's exactly what I'm afraid of, nomoreheels. I don't know whether I have an erosive form of RD, because I don't yet actually have a diagnosis that explains my symptoms... But I *do* know that whatever is happening to me doesn't look - or no longer looks - like OA... For instance, as well as more classic degenerative changes (arthritis in feet, ankles, knees, hip, shoulder, wrists, hands and jaw, at least), I have three bits of erosion on my hands that showed up in x-rays last Nov that weren't there 15 months before - and so maybe more than 3 by now. Nothing else has been x-rayed within 2 years, so maybe there is more erosion elsewhere too... And calcific/fibrous lumps have grown at my tendon attachment points at various points in my body... And my thumbs and toes are 'drifting' - my thumbs have deformed so that I can't get my hands flat any more... And all within the past year or two... I am scared that because I have no clear diagnosis, I am not getting treatment that might stop this damage... 
As you have some confirmed erosion & what sounds like boutonniere deformity of your thumb & something similar going on with your toes it does sound as though the OA has 'mimicked' RD or some other inflammatory disease for a considerable time leaving you thinking it's the OA worsening.
All these & the other things you mention should be apparent to your Rheumy I would have thought. As a matter of interest how long have you been seeing your Rheumy?
That's not a simple question, nomoreheels! I first saw a rheumy about 2 years ago, when my presenting symptoms suggested hypermobility syndrome and some OA. At that point, I'd had pain and problems for 1.5-2 years that had been dismissed by my GP as psychosomatic, stress-related and/or peri-menopausal. I do think I have HMS, and this is associated with early onset OA, so I'm not questioning that diagnosis - it just no longer adequately explains everything that's going on.
The rheumy then was a HMS specialist at a neighbouring hospital; my local hospital had no rheumy in post at the time. They took 'baseline' X-rays that showed severe degenerative arthritis in my hip and led to a hip replacement 9 months later. The X-rays also did NOT show erosions in my hands, so I know these are less than 2 years old.
Last Feb (2014) I saw a locum rheumy at my local hospital, who confirmed the HMS and said he 'didn't think' I had RA, and discharged me. His report contained some mistakes though, which have always niggled, including saying that I had no morning stiffness, which I did, and that I had no family history of RA, though I had told him my father had it. He has gone now.
The X-rays showing erosions in my hands were taken by orthopaedics last Nov (2014) and haven't been seen by a rheumy. There are X-rays of my feet taken at the same time that show deformities and OA, but again they have only been seen by the OS not a rheumy...
The rheumy I'm due to see on Monday is the third, different one...
I have (so far at least) always been sero-negative, and I don't have much swelling or joint inflammation. Most of my inflammation seems to be in my tendons and entheses. I do clearly have OA, so the question for me is whether I *also* have RA - or (I think more likely, as far as I can tell from my research) one of the spondyloarthritides...
If the diagnosis is still 'just' HMS and OS, then I want to know why it's so aggressive compared to others, and what can be done... The usual approach to managing those conditions is pain-killers plus physio, and (as the first rheumy put it) "You just have to learn to live with a certain level of pain". Well, I have, but I'm fed up with it. And I'm deforming, and surely I can't just be expected to 'do nothing' and let that continue?! I'm already likely to need surgery on my hands and feet (I turned foot surgery down last Nov)... Is my life just one operation after another? Or could the progress of this joint destruction be slowed?!
My brain isn't holding a whole lot of day to day info just now so refreshed myself by looking through your previous reports & you do seem to definitely have something other than degenerative arthritis & HMS going on from what I can understand. I don't know much at all about spondyloarthropathies but as much of what earthwitch who does has shared has rung bells with you it wouldn't surprise me at all if this is where your new Rheumy will concentrate, assuming he looks further than typical RD symptoms.
It does sound as though concentration has been on HMS at the detriment of something inflammatory going on, probably due to blood tests I'm thinking not showing unusually raised inflammatory markers. This is where experience is all in my book & I know Registrars need to learn but as I've come to learn since being back in the UK too often they don't ask their Specialist if uncertain of something. Making basic errors in his report does seem to show he's not listened to you properly so what else didn't he do?
Going back to you being told that you'll have to live with a certain level of pain just isn't true as far as OA is concerned. My OA pain is considerably better since my Rheumy requested my GP take responsibility for my pain relief. That it's taken reasonably hefty meds to give me relief proves that it's been taken seriously by both my Rheumy & GP.
Your final question very much depends on this new Rheumy being thorough & reading you as well as bloods results & any imaging which assume he'll order as no Rheumy worth his salt in my book relies on his predecessor's record of events. I guess you've made a bullet point list to help give you Rheumy a briefing, the correct history. I do hope he doesn't dwell too much on what's gone before, treats you as a new patient presenting with RD/spondy symptoms & you leave with appropriate scripts for meds to try to relieve your symptoms.
Third time lucky for you hopefully, though that certainly shouldn't have been the case.
Thank you for taking the time to comment and to read other posts of mine, nomoreheels. I have spent so much of the last few years being dismissed that I sometimes wonder if it's all in my head, so it's reassuring to hear that someone else Iooking also thinks there may be something other than OA and HMS going on. Not long til I see the rheumy now (Monday)... And I see the OS today, so I shall ask his opinion too...
Oh it's no problem, necessary at the moment lol! Thankfully I'm tapering the gabapentin as of lunchtime so hopefully my addled brain will start to come alive again!
Just my thoughts what's going on with you of course, nevertheless I hope you get definitive answers/diagnosis on Monday & all went as you wished today. Do keep us updated won't you?
The orthopaedic appointment was a bit of a nothing. All the OS was interested in was whether or not I'd changed my mind about foot surgery. I haven't. He hadn't remembered I'd seen him (twice) before, and was quite dismissive of the idea that I am rather young to be so riddled with OA: "You are", he said, "But there are a few of you"... I'm not convinced he'd even *heard* of enthesitis... I hope I get a more thoughtful response from the rheumy on Monday!
It's so annoying when you have questions which you want answers to & you get nowhere. I know he's probably seen hundreds of people since your last meet but he could have feigned interest in you at least, even if he didn't know how he could help you.
I do hope you have a more productive appointment on Monday. Prepare well so you can state your case if you feel the consultation isn't going how you need it to & keep in touch. x
He said something very telling, nomoreheels, which I think captures the essence of orthopaedic surgery perfectly. He said "We treat for pain, not for function"... Well, I can see the logic of that: often, the only think they can guarantee if they fuse or replace a joint is that it won't hurt any more! But from my point of view, there are all sorts of things I can do to manage some of the pain, but there seems to be nothing I can do about the loss of function I'm experiencing, and that really bothers me. And so does the apparently-rapid deterioration... If it didn't hurt at ALL but still my thumbs stopped working and I became less-and-less able to walk, that would be a problem, wouldn't it?! So all in all, I don't think OS is going to help me much...
Maybe they'd learn from Noel Fitzpatrick, The Supervet! He makes or has made joints etc for all manner of animals, for titchies to giants! Seriously, I don't understand why it's necessary this day & age with the materials available to fuse any part, certainly not the ones we rely on most through life unless it's a life threatening situation & just not the better decision or wanted answer. Surely we're not having parts fused just because it's costly to do so? The more that were done then the cheaper the parts to my mind! You said it, they only think they can they can guarantee if they fuse a joint that it won't hurt any more... thinking to my mind isn't good enough with all the advantages in science & materials available to them nowadays! It's cost! Ooo, too many exclamation marks! But it makes me so cross.
Quite. I just can't get my head around having my mid-foot and 3 toes fused on each foot. I'd hardly be able to move my feet and I wouldn't be able to stretch or wriggle my toes... It would affect my gait, and I imagine it could cause more problems in my knees/hips... It seems to me that it might solve one set of issues but it would create a whole load of others... It doesn't seem a good bet to me, and like you, I think there ought to be better options...
I know that I took ibuprofen in the early hours before my first ever appointment and he told me that from my bloods (taken a week previously) something was going on but as no sign of swelling or much pain in the day I had to wait a further four months to get a diagnosis of RA and was then put straight on MTX.
Prior to the 2nd appointment I tapered off a few weeks of Prednisolone with my GPs support and decided myself not to take any over the counter pain meds in the run up to my appointment - perhaps three days beforehand. I was in a lot of pain and I had very swollen synovial joints so was a clear cut case of seronegative RA for him to diagnose and treat. No regrets about a few days of extra severe pain because unlike dmards these NSAIDs don't actually slow the disease process - only mask it. Seronegative people often get passed by otherwise.
Also some are more sensitive to the drugs than others, both in terms of blood tests and visible signs. I need to be reminded by being in pain in order to convince myself and others that I should be taken seriously. Not that I'm ever really out of pain but there is some low level stuff I've just got used to now.
Nothing has been remotely clear cut ever since I was diagnosed but I learned then to make sure I'm as drug free as possible (and presently I'm trying to taper off Prednisolone in the run up to meeting a new rheumy in three weeks). But with some prescription drugs such as steroids this just isn't possible so don't beat yourself up if this is the case for you. I did try to taper off steroids faster recently but all hell broke loose! I'm now following my GP and rheumy's advice to the letter - but then I do have a rheumy I can ask, albeit by email at a distance.
So I think Helix probably sums up my perspective best on this but at the end of the day it's your choice. If you are going to do this then probably best to do it 100% though rather than ask for advice on possible alternatives.
Could you check this with your GP at least as this is a prescribed drug?
Thanks Twitchy. I was planning to ask my GP at my appointment last week, but in the end I forgot (I was asking about so much else, and he made a diagnosis of tendinopathy and possibly enthesitis which I was expecting, but which shocked me)... Now I'm too late to get another appointment in time before my rheumy app't, which is why I've ended up asking here...
Gosh no wonder you forgot to ask. These two diagnosises might help your rheumy as they are more common with spondyloarthritis such as Ankylosing Spondilitis and Psoriatic Arthritis as you probably know. Good luck with it all anyway. Tx
Yes. In fact, after my GP first suggested some kind of 'tendinitis' and referred me back to the rheumy, it was Earthwitch here who pointed me towards info about enthesitis, and prompted me to go back to the doc, who confirmed it...
I'm in a pretty bad way - constant pain; some kind of obvious tendinopathy; a mixed picture of early onset and aggressive arthritis (degenerative plus now some erosions) in multiple joints; a hip replacement last year and other surgery on the cards; hands and feet losing function and deforming... And more - so as you can imagine I'm pretty desperate to get a diagnosis and some treatment that helps and stops the damage...
What can I hope for?
Sulphasazine 
Blood tests
What are the normal blood ESR and CRP levels I have never understood what they should be?
Can I take two dmards at the same time?
