Painkillers v destruction: This may have been asked... - NRAS

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Painkillers v destruction

Tessthomy profile image
12 Replies

This may have been asked before but what line of pain killers do people take? I'm currently on embrel and recently come off mtx due to tummy probs. I have now noticed I am flaring quite a bit more which is fine as I attack it with paracetamol / diclofenac / steroids depending how bad it is.

Also I wonder if anyone knows .. If there's pain is there also destruction going on as well? All v worrying as when I was on the injectable mtx had virtually no pain, but really don't want to take it again. I am hoping to be started on sulfasalazine in the next few weeks to help boost the embrel again. It's all such a daily balancing act with this blimin disease! TT x

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Tessthomy
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12 Replies
helixhelix profile image
helixhelix

I don't think there's a hard and fast rule on this, as we're all so different and RA comes in so many different flavours. So if you have an RA that isn't very erosive then I think it's possible to have pain without joints being permanently damaged. The inflammation of the joint linings cause pain, but I think that the erosion is generally caused by the build up of synovial fluid in the joints (which I have in my mind as the equivalent of a pouring a nasty acid over your cartilage). I certainly have had a fair bit of pain over the years, but all the damage that shows up on ex-rays is the stuff that happened early on before I started on the drugs.

Tessthomy profile image
Tessthomy in reply tohelixhelix

That is definitely a good description !

nomoreheels profile image
nomoreheels

I'm sorry to hear you're in pain at the mo. It's just not fun is it? My experience is that when I'm well controlled I have little need for pain relief which is a good indicator for me but as helix says RD comes in many flavours, which I think sums it up well! I'm not well controlled at present & taking max dose co-codamol & feeling little benefit which I believe is due to me only taking an NSAID prn as requested at my last appointment & so that would indicate inflammation causing my pain. I've been on oral steroids now for just short of 9 months, as after nearly at the end of tapering my pain increased to a such a degree that my GP reinstated them but still have pain, albeit less than without them. I see my Rheumy tomorrow & hopefully a full review of meds will be performed & put me on the right track again. Whatever is causing yours I would have thought long term steroidal treatment isn't the best idea, if you're taking them for as part of continual pain relief, especially if you have concerns regarding bone density. Have you had a DEXA scan since being on steroids to determine your bone status?

I think maybe speaking to your Rheumy team or GP to see what their opinion is & if they think alternative meds could be worth trying, possibly a different NSAID that works better for you, that could be all is needed.

It's a shame you couldn't tolerate the side effects of MTX, particularly as you had virtually no pain on it which again suggests maybe you were better controlled on it. I've found it's the better of the two DMARDS I've had in controlling me. Were you offered an increase in folic acid to help decrease your tum problem? Mine was upped to every day except MTX day & my side effects reduced & only feel a little off food & more tired the day after injecting now. I also experienced tum problems & my LFT level raised when my dose was increased from 15mg to 20mg but dropping back to 15mg solved that.

Hope this helps.

Tessthomy profile image
Tessthomy in reply tonomoreheels

Hi nomoreheels yes I was on folic acid most days but they did say that it can lower the effacing of the mtx so was told to reduce it if I could. My dose of mtx was pretty low anyway. It didn't effect me tummy wise every week, but was so unpredictable. I could even start to feel ill five days after the injection.. Plus the fuzzy head .. I was happy to give it a go at giving up, but I shall have to certainly weigh it up again if the flares become too much with embrel on its own, or the sulphasalazine doesn't kick In well. Thanks for you reply TT x

Hi tessthomy, I do believe helixhelix is right. I also take Enbril and the injectable methotrexate anda few others. I think the combination of Enbrel and metho has helped me so much I know everyone is different however I would not need to take a pain reliever for my RA. I have fibromyalgia and I have to say it's kicking my butt! For that only Percocet seems to work. The Percocet also did work for my RA.

I do hope you find what works for you both for the RA and pain.

I have say I think the healthcare in the UK is much better than here in the US.

Tessthomy profile image
Tessthomy in reply to

I'm surprised you said that but also pleased, (but not for you) ! I'm hoping to get back to the right balance soon. Keep well TT X

earthwitch profile image
earthwitch

Ask your rheumatologist if they really think the Enbrel is working for you. It shouldn't need "boosting". If its not working well enough then there are other anti-tnfs you could try.

Tessthomy profile image
Tessthomy in reply toearthwitch

Earth witch I guess we all get told different things but my understanding is embrel can work v well on its own, but that with a DMARD included makes it work better for longer possibly, but who knows?! These consultants all have different views and we have to just with what they say. Just want to get the balance right with minimal pain and tummy trouble..quite a feat in the RA world! Thanks for your reply TT x

pdp1134 profile image
pdp1134

I am one of the lucky ones for whom Tramadol both works and has no (noticeable) side-effects. I take methotrexate and naproxen. I have been on Embrel, which worked pretty well for a couple of years and then kinda stopped working, so I stopped taking it.

Tessthomy profile image
Tessthomy in reply topdp1134

Do you have another anti tnf pdp1134? X

pdp1134 profile image
pdp1134 in reply toTessthomy

No, I briefly went on Humira, but came off for an ankle fusion and never resumed. Whenever I try to reduce the amount of methotrexate or naproxen or tramadol I always return to my original dosages.

Tessthomy profile image
Tessthomy

Thanks for all your replies folks. We are a mixed bunch indeed. Luckily I don't take steroids regularly as yet, and only diclofenac as and when. I've just noticed more pain since off the mtx, which is a shame as I had no pain virtually when on it. Maybe when sulphasalazine is re introduced it may help again. My understanding is that anti tnfs work better when with a DMARD whichever one that is. it's such a juggling act isn't it? TT x

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