I was on naproxen twice a day along with paracetamol which the naproxen had no effect anymore. I was told by my g.p. that naproxen is the strongest anti inflam. it used to help a bit but no more. phone rheumy nurse and said to go to g.p. for stronger pain killers. he put me on codeine with the paracetamol. 15mg codeine 4 x a day or double it if wasn't helping. I did this and it was bloody useless. stopped them as no point in popping pills if they have no effect. my mum suggested parasol which I am now trying. I had bloods done again last week and so surprised s.l.e. rate has improved. why is my pain and fatigue getting worse. nobody seems to want to give me anything strong enough for my pain and fatigue. any suggestions would be greatly appreciated. daren't go to g.p. again as they think I am a hypochondriac. getting so fed up and down as all my benefits have been stopped on top of everything else and i know stress makes this condition worse. I have been in this flare for a long time, since April and no improvement since the first lot of steroids. second dose didn't have the same effect as not the injection. why won't anyone do anything. not got my next appointment until February 21st. can cope like this. now i am having to job search. ridiculous.
in pain and so fatigued. pain killers useless. - LUPUS UK
in pain and so fatigued. pain killers useless.
Naproxen doesn't work for all inflammation. Doesn't work for my version - but pred does an ace job. You can't assume any one thing is the right one.
I was put on prednisolone on my first visit to rheumatologist. 20mg 1st week, tapering by 5mg each week then nothing. when I had my 2nd appointment I was given the injection. waste of time that was. I was then put on prednisolone in the way I was the first time 20 and tapering by 5 each week to nothing. since then I have been put on hydroxy which I have been on for 2 months. I know it takes about 3 months but no effect yet. I seem to be getting worse. I was told to take naproxen twice a day with paracetamol when needed. as I said earlier, you know the rest. having to muddle along in pain. they don't like to keep giving you steroids. the 2nd time I had them didn't have same effect anyway. was given nothing in its place.
There is nothing wrong with low dose steroids:
practicalpainmanagement.com...
Done in PMR patients but low dose pred is the same wherever - and if it works, what's wrong with that? Unreasonable fear on the part of doctors who don't have the pain.
I felt like a new woman the first time. steroid injectiondid nothing at all. second course of prednisolone didn't do anything like the first time. not been give anything only codeine and paracetamol. useless. took my mum's advice as g.p.s are useless and she is taking panadol which helps with her pain. supposed to be a lot stronger than paracetamol. I have taken 6 so far and nothing eased yet. I am starting to get worried as nothing seems to be helping
x
Panadol is just brand name paracetamol - so it costs more. Panadol extra has paracetamol and caffeine - supposedly to make it work faster. That is all. The rest is marketing and the placebo effect can be quite strong.
Please don't take too much paracetamol/panadol, the maximum dose is 8 tablets in 24 hours and to take more is very risky. Paracetamol can cause serious liver damage and the line between maximum therapeutic dose and overdose is relatively narrow, it is very easy to take too much for you.
Go back to your doctor. Please.
I take 8 a day. Fed up with going to g.p. I am treated like a hypochondriac. xx
started taking them today. gave up with codeine after a week as did nothing. popping pills for no reason. xx
Panadol is a brand of paracetamol.
i know but it is supposed to a lot lot stronger. x
I had a bad flare after I started plaquenil. Plaquenil won't stop you from having a flare, although the hope is that they are less frequent and less severe. I think in the beginning when plaquenil hasn't totally kicked in the flares are more likely to be like the "old days."
For me Codeine works better if I catch the pain earlier on, and don't let it get bad. It reduced side effects for me to take a half a pill, wait 45 minutes or longer to take the other half. If I wait to long the pain does can get out of hand.
I sympathize with you. I'm having a bad time with pain right now, too.
codeine didn't touch me at all along with paracetamol.
My pain moves especially in my back. Goes from one side to the other. Could the pain be an infection or something as pain killers not touching it, no matter what I try. My g.p. Surgery don't seem to want to give me any strong pain killers.
When my codeine 30/100 was helping, but not getting me through the night because of the 4 hr regime, my GP cautiously tried me on BuTrans patches ( the smallest dose first to see if I could tolerate it). For me, they have helped a great deal and I have increased to the dose which helps most. I once said to a GP how I hated all the pain meds, but she just felt life is intolerable with continuous pain. Do you go to a GP practice? Might there be a more sympathetic GP?
Naproxen did nothing for me except increased my acid reflux, the last thing I need.
If you look at the ingredients of packets of paracetamol and ibuprofen, they all have the same amount of the basic drug. Cheaper to buy generic than the heavily advertised brand name ones. Some of the branded have caffeine as an extra. If that helps, take a cheap generic with a cup of coffee.
I was on Naproxen but changed to Meloxicam which I take once a day and seems to be more effective. Plus paracetamol and hydroxychloroquine seems to do the trick. The thing that has made the most difference is Azathioprine to be honest. I won’t take opiates unless I m absolutely desperate so I avoid codeine. Ask about Meloxicam maybe
Thank you so much. I will get in touch with Rheumy nurse again as g.p. Doesn't seem to know much about lupus. X
Hello !i was on naproxen for long time too and didn't work so my rheumatologist's nurse put me on a stronger anti-inflammatory called TAUXIB 90mg contains Etoricoxib ....she made me take it for 2 weeks everyday (with a gastro resistant tablet) and now i only take it when my joint are really swollen ....i would recommand you to ask your GP ....and try
And I Hope you find solution soon
Laura
My g.p. Doesn't really have much knowledge of lupus and hasn't got a clue. Rheumatologist nurse told me to ask for stronger pain killers but I was told naproxen was the strongest anti imfammatory. X
Hi Mandypandy1969 ,
We have an article on our blog about pain management in lupus which may be worth reading if you haven't seen it yet - lupusuk.org.uk/pain-managem...
thanks Paul. I havent even been able to go for a walk because I am in so much discomfort. since being on hydroxy for the last 2 months, my condition has somewhat worsened. I can't even play my sport which is good exercise using all your body. I play short mat bowls. thats my one and only social thing I do and i have had to pull out of so many games lately. it's so unfair and now i am expected to go back to work. it's a joke and very stressful. I know all this stress is making things worse. I have been in touch with rheumy nurse twice and given advice but another dose of steroids didn't have the effect like the first time and different pain killers/codeine haven't touched me. naproxen and paracetamol stopped doing anything. codeine and paracetamol the same. I am so frustrated and feel a nuisance having to keep going to the g.p. and ringing rheumy nurse.
Hi Mandypandy1969 I have gone through a very similar process as you but I have to say that I am not on any treatment yet. I have been diagnosed with CNS Lupus with a lesion on my spinal chord which causes chronic pain down my right side. Started with naproxen, nothing, then gabapentin, nothing, pregabilan, nothing, prednisone- was pain free for 5 glorious weeks then nothing. The following meds is now what I have been taking from July prescribed by my pain clinic. 150mg of tarpentadol in the morning (along with hydroxy and vitamin d for lupus) then 200mg of tarpentadol and 100mg of nortryptaline to knock me out at night. Tarpentadol is stronger than tramadol. Positive is it works (if I behave myself ie don't over do it) the negative is it makes you tired which I know is something you are trying to avoid but I still work full time (I'm in the military) and I get by.
Bottom line was I had been in pain for a year and I would take anything to stop it so the pain clinic came up with this.
Hope this helps in some way. Good luck and I hope you get relief soon.
Axx
thanks. I will find my nearest pain clinic. xx
Lupus doesn't always cause inflammation.
I can't tolerate anti inflammatory meds so I'm on slow release morphine twice daily. Also on 5mgs pred for last 9 years ish non stop increasing to 15-20mgs for a flare which I've been in now really for last 20 months since having my last baby!
Also on hydroxychloroquine and mycophenolate.
What/where is ur pain the most? Mine is mainly my hands so got to the point where I could barely pick my baby up I often lift the kids with inside of my elbows.
Pain management clinic is a good idea and heat pack or hot water bottle.
Hope u get sorted just go back to the gp if ur pain is not controlled. If u have chronic long term pain u need something effective. I found bupronophrine patches really helped then had a skin reaction from them! I was so gutted, I wouldn't go and tell the gp for 4 wks ended up with blisters!!
It may be that u need a course of steroids and then stay on a low dose?
I had steroids first time I saw rheumy. 20mg for a week, tapering by 5mg a week then to nothing. I felt great. 2nd appointment, symptoms back with a vengeance. gave me steroid injection, didn't work. phoned rheumy nurse, course of prednisone again, same course but not the same effect as first lot. back to bloody square 1. phoned rheumy nurse again as after taking naproxen and paracetamol did nothing anymore and was told to go to g.p. for painkillers. gave me codeine to take with paracetamol. no change. waste of time. pain and discomfort so bad, worse than ever since I started hydroxy. don't even feel like going for a small work and can't do my sport anymore at the moment. my pain is all over. back, shoulders, neck. jelly legs if I go up a slight incline while walking. avoid steps and stairs and take a lift if possible. my arms I like lead weights and I struggle to comb my hair , shower etc. legs and arms like jelly and lead if I try to use them even for a couple of minutes. sorry for ranting on but on top of that, all my benefits have stopped due to d.w.p. saying I am fit for work, causing me to get so down and stressed out. not even driving anywhere much due to the severe fatigue. I feel hopeless at the moment. xx
I'm so sorry u are feeling so awful I know what that's like!! Are u on anything for ur mood? U may just need a bit of a pick me up and more steroids to calm things down. How long have u been on hydroxychloroquine? Can take about 3 months to kick in. I'm on another immunosuppressant too and recently increased to high dose so waiting for that to help. I have 2 small children so find it hard at times when all I want to do is sleep! X
I am on mood stabiliers for my bipolar.
If u have chronic pain then u need something that is covering that pain constantly like a butec or buTrans patch. U don't have to be on it forever,j just until they can control the disease on hydroxychloroquine or something else.
I work 15 hrs a week which I just manage still, I'm in pain constantly and worse on a morning, it takes me about 3-4 hrs to get going but everyone at work is good they know that's how I am and by the afternoon I'm a bit more able! I try to use the stairs at work but I walk up them sideways with my back against the wall which takes the pressure off my lower back, I prob look odd but that's how I do it and everyone knows that's just how it is! And it's how I can function, also have a bye badge now which helps me x
I can no way work with the fatigue and pain. had my e.s.a. stopped in november and my health has got so much worse. i was getting e.s.a. for my mental health issues. i now have lupus and decided to stop it. I am appealing and going to try for pup aswell as so many people keep telling me that I would get it. I have to claim j.s.a at the moment. my advisor has said to look for something for 8 hours a week and no more than 15 minutes from home because of my fatigue as when I am really bad, I daren't drive too far. xx
I am SO pleased to have found this site!!!! This is really long....and even if no-one reads it-I will just feel better for writing it down!
Legs!
How to deal with flare up?
Cyclosporine ,Pain and fatigue 
