What pain killers do people use: Hi everyone, at... - LUPUS UK


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What pain killers do people use

Gillyg profile image

Hi everyone, at the moment I only take plaquenil and 3 mg steroids for my SLE. I take others for angina. I have been on a lot more medication in the past but have been whittled down to the above. I have been told by my Rheumatologist that everything is settled but I am still in so much joint pain. It seems to be getting worse again. My hands I can barely use in the morning and increased pain in my elbows and my muscles in my legs make it difficult to get up from sitting. I take paracetamol between 6-8 a day. I can’t take codeine what else do people take. I never get offered anything else. Thank you.

14 Replies

Hi I feel your pain ! Sorry to hear that it’s not controlled. Do you take any antiinflammatory medication, I use voltarol suppositories and co-codamol 30/500 I swear I wouldn’t get by without them. Speak to your GP regarding pain management no one should have to live in constant pain. X

I think you need to speak clearly to your rheumatologist and ask him to treat the patient and not the lab results. If you have joint pain to this extent then things are definitely NOT "settled".

If you are taking that sort of amount of paracetamol on a regular basis you need to ask your GP to check your liver function. One lady was told to use paracetamol not pred for her pain, the GP was sure it was OA not her polymyalgia rheumatica, and within a couple of months her liver blood tests were so high he sent her for an emergency liver u/s scan - nothing wrong, just the paracetamol and everyhting went back to normal when she stopped.

Freddi1019 profile image
Freddi1019 in reply to PMRpro

Yes...Yes..I need to do the same thing. My arthritis doctor took me off of everything but 15 mg of methotrexate once a week. I was in so much pain....I put myself back on the plaquenil and will see a new doctor next month. Be your own advocate.

Gillyg profile image
Gillyg in reply to Freddi1019

I was reduced on my plaquenil at the beginning at the year even though I had told my consultant my joints were in pain. After 6 months I insisted I went back on them the pain was horrendous he wasn’t happy but said yes. But I am still in daily pain. They do listen to what the bloods say and not what you are saying. Cheers.

I can’t take NSAIDs and when my GP realised the co-codamol simply did not get me through the night, he prescribed BuTrans patches. If you can tolerate them ( you have to start with the smallest patch first) you can up the dosage so that you are able to manage reasonably well. I wear the patches 24/7, 7 days a week, then change them. I sometimes take a top up amityptyline at night.

My miracle cure is Tiger Balm. Branded version not cheapo version. White not red.

Be your own advocate. I love what the person said...treat the symptoms and not the lab results. Keep calling them and let them know about the pain....there will be documentation about the amount of pain you are in...he cant deny that you have kept him/her informed. Sometimes we just accept pain as normal...it's not.

Hi I took Plaquenil for six weeks I became hyper, lost my appetite and dropped six kilograms. The sixth week couldn't sleep and the pain in my arms, legs and joints, the doctor told me to discontinue. six months ago I got ovarian cancer and had Chemotherapy then surgery and back to Chemotherapy. I only take Panadol Advance as opioid or codeine gives me a bowel obstruction and have to bear the pain. The past ten years so many different medications but the worst was Plaquenil. I'm taking Melatonin 5mg before bedtime this helps me to sleep at night which helps the pain after a good night sleep.

Hope I was of some help. Regards

Tylenol is all I can use because I’m allergic to aspirin and all NSAIDS. Here in the US they don’t prescribe opioids even codeine much anymore due to the amount of deaths from overdose. I use Ice and heat as well.

I take Tramadol 3-4 times a day for joint pain and muscles. It makes you feel dumb but I wouldn't be able to function well without it. I have enthesitis and AS as well as Lupus so that may be why the prescribed it fairly early on. I also use topical Lidocaine 4% and looooooooots of ice. Compression wraps work in a pinch for temp relief. Sans this past few months, my standard disease meds are Plaquenil, Medrol (steriods) and Stelara (biologic). I've had to go on more hardcore pain killers in the past. It's a slippery slope for some. I'd ask your doctor about Tramadol if you really need prescription level relief. Hope this helps!

Beyond drugs, if you can be active, lots of options to help relieve joint pain.

I cannot take nsaids because of other meds that I am on so my GP has prescribed tramadol which really helps me..however it doesn't suit everyone n can cause side effects..there is also a danger of becoming addicted..so I generally use paracetamol n I take one 50mg tablet of tramadol when paracetamol hasn't worked..after a couple of hours if I'm still in pain I take another tramadol tablet and that generally sorts me out..one of the other troublesome side effects of tramadol is constipation..I'm a regular type of gal so if I have that side effect I lay off the tramadol for a couple of days until things r normal again.

U definitely need a medication review..good luck xx

My rheumy has said I most likely have Behçet’s rather than lupus as my bloods are negative. I also had constant ulcers until put on colchicine. Joint pain is a major symptom though. I am on hydroxychloroquine, highest dose solpadol and nefopam. I still get joint pain but, usually, not quite as bad. Still have some really bad days especially if it is very cold, wet or damp.

Thanks everyone I need to phone my consultant and tell him I just accept the pain as I don’t like to complain but I need to really. 👍👍

Hey Gilly,

I personally took some pills made from extracts such as Boswellia, Ginger and Vitamin D. These helped me and provided a great relief to my joint pains.

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