I’m writing this as the last few months I’ve been in excruciating pain . I have sero negative inflammatory arthritis. I’m on weekly benpali injection and arcoxia for day time pain along with tramadol and amitriptaylin on a night . The pain is getting worse my meds don’t seem to be working apart from on a night . For day time pain I take arcoxia 90mg dose one daily, I just wondered if anybody can suggest anything to take for pain during the day as this is when I am struggling. I’ve contacted the hospital but no body has got back to me , the doctor says I’m on everything and can’t suggest anything else. I’m fed up thanks for your help . Lucy x
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LJS13
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Hi that's sounds awful. If the painkillers are helping surely that a sign something is wrong. How long have you been on the weekly injections? They can take up to three months to get into your system . But if you have been on them longer then I would take the bulls with the horn and call rheumatology back .they may change in some cases to a different medication or infusion. There are plenty of them to offer you. I have zero negative ra and was told by my rheumy that it was the same treatment as sero positive but he would try different treatments until he got me controlled. The other thing they can do but are not liking to do at present due to covid, is some short steroid therapy. I think if I was you I'd be calling their helpline and asking for more help as you are in pain. The patient should be the centre of their treatment , I hope you get help soon.
You may be given a change of drugs or short term steroids from my experience. But look at the other answersc lots of very good suggestions . I used tens machine and aldo got acupuncture which helped , I like the sound of the course StB described too x
So sorry you are in so much pain, we are not medically trained so suggesting what pain killers to take would be wrong and could be dangerous. I'd keep trying the hospital saying its urgent and I wouldn't accept your doctors can't suggest anything more. I do hope you feel better soon, sending a gentle hug 🤗
I called my rumey team a few weeks ago in absolutely agony! They suggested a week of 7.5 mg of steroids and if that didn't work to ring them back and I would have a steroid injection next week. Can you leave a message on an answering machine? It's worth it if you can. Good luck. Take care
I wholly agree with allanah and Bootoo that you need specialist advice so do contact your Rheumy and ask for help. I do hope you will get some relief soon.
As all the others but also write down for you how you feel your pain is after taking the drugs, does go away a little or not at all etc. There are lots of other drugs to take for pain my one so far after going through so many is co codamol. Also for me changing also helped as well. My GP is good so I do pain management with him as easier for me to speak to quickly at the moment . Good luck
Sorry to hear your in so much pain. It's a horrible feeling but it will pass. Usually in this situation my rheumatologist would give me a steroid injection which infact I've had to just get done because I too have been in alot of pain and having bad inflammation. If you can't go in to the hospital for the injection then they should be able to provide Tablet form of the steroid. It is really difficult to get hold of doctors but I hope you get through and get some sort of relief from all this pain
Thank you. Did they mention if the steroid injection is less risk than the steroid tablets at all I’m a bit worried of the risk of COVID when taking steroids.
Where is the pain, would you say? In your joints? Or more in your muscles? Or both? And how would you describe the pain?
Asking because everything you’ve described sounds so similar to me about 5 years ago. I spoke to the NHS about it - and was given short shrift, saying that’s what I should expect with RA!!
Eventually, I paid to see a pain specialist in London. He immediately diagnosed fibromyalgia on top of the RA.
I’m not saying that’s what you have. I’m just encouraging you not to give up questioning why there is pain - and to persist with your medical team in finding some way to manage it better.
If you haven’t yet tried a TENS machine, I’d also recommend giving one a go. It kind of distracts from the pain if nothing else. £20 on Amazon. Worth a shot!
The rheumi has mentioned fibromyalgia in the past but nothing more was ever said about it. The pain feels like it’s in my joints but every wear I feel heavy and my joints are very warm. I haven’t tried a tens . I will have a look . Thank you
Interesting. I’d describe my limbs as feeling like concrete...constantly heavy, tight and achy. That’s the fibro. Then there’s the joint pain from the RA. Really hope the TENS gives you some relief. It won’t be a miracle cure but it kind of keeps your brain from thinking about the pain, and also makes the muscles work a bit. Sending you positive thoughts! x
Hi Lucy ånd sorry to hear about your pain. That was my first experience of s-n RA 18 months ago and I still recall it as the worst. Steroids helped me and I have also been using wireless TENS pads which have relieved but not cured discomfort. Like others, I think you deserve more/better attention from the NHS.
Sounds very much like me. 38 - diagnosed 15 years ago - never been under control. Also sero negative. I dropped out of all care for ages as I was so frustrated with it all. Hope you can find some relief x
If you don’t mind me butting in here, how do you find the wireless TENS? I’ve got a wired one at the moment but thinking about going wireless. Is it effective enough? And do the pads last very long? Thanks? X
Sorry to take so long to reply. My TENS was a gift so I had to look it up: Med-Fit Wireless TENS Machine – Total Body Pain Relief. It is really good and I'm on the original pads 6 weeks on tho' they're not too dear to replace (I think). Good luck with getting some relief.
Hi LJS, I am sorry that you are in s much pain. I sympathise because I have severe pain a lot for the last few weeks. I have just completed a 14 day ACT course (Accept and Commit Therapy) on an app called "MyArthritis" that was developed with NRAS and the NHS by a company called Ampersand Health. You only spend half an hour a day at most on the course and I found it helped me with dealing with pain in a very positive way and other courses are well worth doing . It's worth having a go, you have nothing to lose and a lot to gain by it. I wish you well.
Hi Lucy I'm sorry to hear about your condition, firstly I would like to say I have no medical qualifications, but I've had nearly 30 years of suffering and now 2 years of being in remission, looking at your list of medication you are on some serious painkillers and suppressants, I note no methotrexate in conjunction with your biological medication (benepali ) I'm presuming its because you cannot tolerate it, I have one suggestion and that is to ask your consultant if you can switch from benepali to enbrel (etanercept), the changeover time would be down to their expert knowledge and advice, but in my experience the only reason not to switch would be cost and these days it minimal very small, and what cost can you put on someones health, enbrel is made by pfizer and in my opinion is superior to benepali , they may come up with different reasons for dismissing this idea, I'm sure the real reason that they may not be honest enough to give you would be the cost, so you may need to be persistent, it's difficult for me to say this because of the position I'm now in with their help, but sometimes their budget can rule some of their decisions, if you don't get a favorable response from them you may need to be a thorn in their side, good luck God bless and I hope you get better soon.Mike x
Thank you for the reply. Yes methotrexate made me very ill so no more of that thank god. I was previously on humira but that didn’t seem to do anything. I’m awaiting to see what they will offer next and fingers crossed it will work this time . Yes I think the same as you there with the budget . X
I thought that might be the case regarding methotrexate that's a shame, it's nearly always given in combination with biological medication that's probably the reason you're not getting the full benefit from benepali, I now play golf twice a week when not in lockdown that's a 6 mile walk each time and live a normal life and credit that mainly to methotrexate, just goes to show we're all different. x
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