Long time lurker first time poster I was officially diagnosed on February 2020 to have rheumatoid arthritis and ankylosing spondylitis.
I'm currently taking etoricoxib 60mg/day as a NSAID and Imraldi and methotrexate. But the pain is horrendous especially in my wrists ankles hips knees and sacroiliac joint as well as neck. Im only on week two of methotrexate albeit being on the rest of the medication for a couple of months now. I was told I have to wait for atleast several weeks for the methotrexate to kick in probably 8-10 weeks atleast and then will get evaluated again if needed.
But is there any other medication I can take in the meantime for the pain? I've tried naproxen and declofenac which where fantastic unfortunately they caused me extreme GI problems so had to stop them.
It feels to me that I've never stopped being in a flair but I'm not sure if I should just live with this excretiating pain or if there is more NSAID that can help?
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PurpleZz
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It’s tough when you’re waiting for drugs to kick in. And sometimes, they don’t - that’s just how it goes. But fingers crossed for you.
Were you given omeprazole with the Naproxen? If not, you could ask for that and try it again. I’ve not had any other NSAIDs. But I can recommend a few other things to assist with pain relief:
- TENS machine
- Acupressure mat
- Gentle stretching and exercise
- Mindfulness
- Anti inflammatory diet
Hope the methotrexate starts working for you soon x
Ah, ok. That’s a shame. The Tramadol Ajay mentioned could be a short term option (it’s not always great to be on long term, for a variety of reasons).
But I would certainly advise exploring a holistic approach to pain management. Meds only help to an extent in my experience. Looking after your body is really important too x
I'm not so keen on tramadol I've heard of the side effects and I'm aware its usually prescribed following major operations to tackle that sort of pain, which mine in comparison isn't that bad 😆I'm definitely going to look into the Anti-inflammatory diet, I was on the whole food vegan diet last year and it was phenomenal for bringing my pain levels down.
I can vouch for your really good suggestions LoneEra. Can I add ibuprofen spray or gel and diclofenac ((Volterol) gel. I use the strongest version.
I’m having a serious problem with a lot of really horrible cramp like pain in my right shoulder / upper arm. It wakens me up every single night - and has done for the past year - I broke my wrist a year ago then developed CRPS when my plaster came off - unfortunately I couldn’t live with the effects of pregabalin or gabapentin, so I’m on my own now and it’s all pretty horrible.
I have asthma so I can’t take regular painkillers or I wheeze. I do tend to wheeze a bit with ibuprofen gel and spray but I can get away with it for a little while. Then I read recently to try diclofenac and it seems not to make me wheeze.
I’m afraid the ibuprofen spray and the volterol have become like a new body lotion for me. I rub it all over my arm and the painkilling effect lasts for about four hours then I waken and spray / rub on a bit more to tide me over until day time.
Unfortunately they smell of menthol and eucalyptus and chemicals rather than Coco Mademoiselle which I much prefer.
Oh, Fruitandnutcase I'm so sorry you're going through this, I broke my shoulder 2 years ago and it's never been the same. Shoulder pain is really hard to manage. Thanks for your suggestions ill definitely try the ibuprofen spray!
Gosh, ouch! I think it must be much worse to break your shoulder - on the other hand at least you have an explanation for your pain, I don’t know what’s wrong with mine it has just happened for some reason. . I’m like you - I don’t think I’ll ever get back to pre-broken arm condition ☹️
I get my ibuprofen spray from Boots - think it’s called Ibuleve it comes in a small spray bottle - you've got to pay attention or you’ll end up with a tube that come in a similar blue box.
Thanks for your suggestions I forgot to mention have tried paracetamol and my GP prescribed cocadamol which doesn't touch the pain. I haven't gone back and asked for anything else yet as under the impression I just have to wait for methotrexate to kick in when and it works.
I spoke to my rheumatologist during our routine appointment in January about it and she isn't very bothered about it and basically said I should wait for 8 weeks!
So I thought I'll ask here for other people's. Experiences before building up the courage to speak to the rheumatology nurse again.
Personally I don’t think you should be expected to be in that much pain for 8 weeks. I’d definitely speak to rheumatology nurse and stress how painful it is and that nothing’s touching it; I can remember that feeling. My experience was when first diagnosed I was given a steroid shot to tide me over until methotrexate kicked in. I also had tramadol off GP for a short time which let me get at least some sleep. Good luck, hope you get some relief soon.
Thanks Kerensa21 its certainly comforting hearing that it's not normal to be expected to keep up with this much pain. I've rung my rheumatologist advice line and left a voicemail I'm hoping ill be able to call back early next week!
Good for you; you can always email advice line too, I’ve often found that more effective. Mine usually say they’ll get back within 48 hours if you leave details but it’s often quicker👍😊
Hiya PurpleZz, welcome. I'm sorry it's being in such pain that has been the reason you needed to reach out. Whilst many of us are prescribed pain relief we have differing needs. Yours at the moment are acute whilst the MTX takes time to build up, which I’m afraid can be anything up to 12 weeks, though it can be a little longer. Even so for some pain relief is still necessary to have in their armoury. What I would suggest is ringing your Rheumy helpline, explain how you are as you have to us. They may increase the dose of your etoricoxib to help ease the inflammation, I also take 60mg but have had 90mg previously, always taken with food & a glass of water. They could possibly suggest a general steroid injection, again to ease the inflammation. That could work quickly. This is unless there's some reason they're not wishing to mask inflammation, to keep an eye on how you respond to the Imraldi/MTX combination. It's a difficult one for us you see, we don't know what your Rheumy is considering, & not all are good at explaining their intentions. You are still taking some form of stomach protector with your etoricoxib aren't you? Whilst they are enteric coated it's usual to take one of the ‘prazole group of ppi's.
This is just a thought. You don't say what dose the MTX is but if it's low to middle (10 - 15mg) there is room for your Rheumy to increase it if after nearer the build-up time it's still not quite helping, if it's thought to be needed even, but there could be that option. The other thing I’m not sure about but Imraldi is the brand name, the biosimilar of the original anti-TNF, adalimumab, brand name Humira. I'm not sure because I’ve not heard of anyone going from a biosimilar to the original, though plenty have been changed from the original to the biosimilar, some finding it doesn’t work quite the same. Maybe it's possible to change at some time, I’m not sure. These are things you could consider discussing with your Rheumy should things not ease from MTX over the coming weeks.
I'm not sure if it would be helpful to ask your GP if there's anything he/she could prescribe, they tend not to know so much about RD & biologic meds so may even be reticent & prefer you to contact your Rheumy team. Though if you have no joy possibly he could email your Rheumy for advice.
Oh Nomoreheels, thanks for the advice I wasn't aware I could go up on Etoricoxib if needed! I'll definitely mention that to the Rheumy nurse once I've spoken to her next week. Its good to know that there is some room to maneuver with MTX I'm just on 10mg at the moment as this is only my second dose this week. When I started on Imraldi (Adalimumab) in July 2020, I was told all new patients are started on that instead of Humaira for cost-saving purposes. The last time I spoke to my Rheumatologist she said if this combination didnt work she might change me to Benpali.
They can be hesitant prescribe 90mg but it may be an option, even if it's only short term whilst the pain is brought under some control. It's restricted if you have cardiovascular risks but if you're symptoms are insufficient from 60mg there is the option to increase it to 90mg, usually returning to 60mg when symptoms are brought under control.Definitely room to increase MTX if thought necessary. It's common to titrate up & then down, until disease activity reduces. I'm currently on 17.5mg injections but have had 20mg but there's 25mg & even 30 can be prescribed. Also if you're on tablets they can offer you the self administered injection (pen) if needed. There's greater bioavailability in those.
Yes, I was aware new patients to anti-TNF's/biologics tend be started on the biosimilar rather than the original. I know costs have to be considered but whatever happened to whatever is best for the patient, I don't know! You may know but Benepali is another biosimilar, of etanercept (Enbrel). At least your Rheumy has options in mind for you.
Just one more thought, are you aware if you've had your DAS 28 score done? If so you have the opportunity to score your pain on a sliding scale called a VAS score (Visual Analogue Scale). It's part of your DAS 28 score & you should be either given a piece of paper with a line & 1 - 10, 10 being the most pain, or you can just be asked. If you haven't then that may be a way for your Rheumy not understand the pain you're experiencing at the mo.
It worked like magic for me.. if you are able to get it, I hope it does the same for you!! 🙏
I was given the pills, not the steroid shot bc I literally have crippling RA from my jaw to my baby toe. A shot would not address everything for me. But the Prednisone pills sure did.
That makes so much sense. I'll ask about that once I speak to my Rheumy nurse!
Hello lurker so glad you joined us.
No one should be left in pain . Your clinic team should be told of your struggles they need to know so they can treat you. A steroid injection may be offered to tied you over or they may offer oral steroids although I’m not a fan of oral steroids but if you get through this bad patch it might be worth considering. Don’t leave it ask them for help . No mor lurking please stay in touch x
At the moment doctors are not proposing prednisone or other steroids because of covid. They increase the risk if you take 10mg or more. However they can be magical, so might be something to discuss with your medical team.
Otherwise as others have said, sometimes a change of drugs can work. You didn’t get on with omeprazole, but might find one of the others is good for you. Same with NSAIDs, there is a range. I used to take etorocoxib, but now find ketoprofene works better for me.
And as well as the non-medical approaches that Lolabridge suggests, don’t forget simple heat and ice.
But don’t live in extreme, pain, talk to your team.
Hi thereI used to take Oramorph and Paracetomol, alternating, every 2 hours (ie 4hrs between each drug). This took the edge off the excruciating pain I was experiencing. In my experience it took a while to convince GP and rheumatologist how severe the pain was. In the end I had to be very specific, I don’t think it cuts when you just say ‘bad pain’. I had to tell them it was 10/10 on pain scale, that I was crying out in pain, could not bear it any longer etc etc, and they finally gave me Oramorph. I’m sure there are better pain solutions, I think the main thing is convincing the medic you need them. Don’t give up! I know how bad it is when you’re in pain like that, I really feel for you.
Thanks, Stormyseas for the advice ill definitely mention that. This has really got me thinking perhaps I'm not communicating my pain enough? Your support has been really immense 😀
Hi there, just a word of warning. One or two people below mention Tramadol as a possible pain killer. A few years back I had a hernia op and afterwards suffered very severe sickness and ended up staying in hospital for two days. At the time they weren't sure what had caused the sickness but thought it could have been the anaesthetic, even though I hadn't ever had problems with it before. Eventually they discharged me with a large box of paracetamol and a box of Tramadol . On looking at the label of the latter, I decided not to take any because it mentioned the possibility of sickness and I didnt want to risk any more of that!
About 2 years later i had very severe toothache and decided to try a couple of Tramadol, so that I could get a good night's sleep before seeing the dentist the next day. I certainly got that, but on waking up, began to feel very dizzy and weird and then v.sick. I was sick about 12 times and eventually my partner rang NHS Direct who said they didnt think it could have been the Tramadol as any effects would have only lasted 4 hours. They advised going to A&E because by that stage I was bringing up blood. Fortunately I didn't have to wait too long at A&E although i was sick 2 more times while there. The doctor on duty immediately said, 'classic case of Tramadol poisoning, we see it all the time' and he rolled his eyes when I reported what NHS Direct had said about the effects only lasting 4 hours. He gave me some anti sickness meds and thank goodness I was ok again in a few hours. It was while all this was going on that my partner, said 'this reminds me of how you were after you had your hernia op.' The penny finally then dropped that I must have been given Tramadol immediately post op. (A few years later i had to have another minor procedure that required Gen. anaesthetic and the anaesthetist then confirmed that it was highly likely i had been given Tramadol after the hernia op.) I now have a note on my medical records saying 'Adverse reaction to Tramadol'. I have also since heard that other people i know have had the same problem with it and some ex colleagues, who happened to have been nurses in a previous life, said 'Tramadol is notorious for causing problems'. So basically, I would not touch it with a barge pole if I were you, but I really hope you find something to tide you over in the meantime - best of luck.
Yep. I wouldn’t be able to hold down my job without the benefits I get from Tramadol. Nothing else touches my pain in the same way.
And yet there’s a stigma around it...and a lot of people like to tell you why you shouldn’t be taking it, or how bad it is for you. Which isn’t that helpful 🙂
I have to disagree with you there; it is surely helpful to be warned if someone could potentially have a bad reaction and it is known to me more dicey than a lot of other available painkillers. Having said that, its interesting to hear that you are fine with it and if it has been so beneficial to you, then that is of course good.
I’m not disagreeing with talking about potential side effects or bad reactions. Absolutely think that is useful.
I’m just saying that when you find a drug that works for you, it’s not helpful to have people telling you that you shouldn’t take it.
It wasn’t a comment about anything that’s been said on here. It was a comment on my own personal experience with Tramadol.
Perhaps it’s something only people on Tramadol can relate to - how often you have to “justify” being on it. Or how many times you get questioned by doctors, pharmacists, airport security and so on. It’s just hassle that you could do without, if that makes sense - especially when, like me, you’d rather not be on medication.
I just saw this! LoneEra im glad you found something that works for you. Our bodies are all different and we all have to find something that works for us to tackle the bigger evil (RA)!If it works for you that's what matters if it wasn't a beneficial medicine It wouldn't have been used by Dr's!
Oh, I'm sorry you had to go through that Cutes. Tramadol can have really bad side effects and is banned in some countries around the world. Thanks for the advice!
Thanks - I thought it was best to warn you, just in case you weren't aware. I know of course some people are fine with it, but i was interested to hear you say that some countries don't use it all - interesting and I think that says it all! Have a great weekend - at least the weather is lovely now.😊
I'm in the same quandary was all prepared to take naproxen regularly but even with the omeprazole/ lansoprazole it hurts my stomach. However, I can honestly say that good old paracetamol or ibuprofen often does the trick even if they aren't long lasting.
Tell me about it Brychni it was the miracle medication for me just have some and the pain goes away! But I guess my stomach had other thoughts 😅Im glad you found some relief at the end from Paracetamol and Ibuprofen!
So sorry to hear about your pain. When I was first diagnosed I had a steroid jab, this worked really well (I see others have also suggested this) and pretty much completely took the pain away.Good luck and hope you feel much better soon.
I would ask if Prednisolone would help. I agree with the others you should not be allowed to suffer. I feel for you and hope you get better soon. There are lots of meds out there and in the beginning it is a matter of trial and error. I am no expert but was diagnosed with acute RA 3 years ago and have been on steroids all that time. Side effects not good but anything is better than what you are suffering at the moment.
I personally find that tramadol is the only thing that gives me any relief. I’ve took 3-4 tramadol with 4-6paracetamol every day for over a year now without any problems at all. 🤗x
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