Just because I've got Lupus it doesn't mean every... - LUPUS UK


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Just because I've got Lupus it doesn't mean every pain I should be prescribed mind altering drugs

EHSs profile image

I have a high intolerance to opiates, and drugs such as amytripline, gapapentin, etc. Please note they are great drugs for some just not for me. They turn me into a lethargic zombie who can't string two words together. I am in a good place for the first time in 30 odd years I am on mycophenalate, hydroxy, 2.5mg pred, and this tends to keep me on a level. Recently I have a trapped nerve i think as no investigations by doctors done in my neck causing pain to my eye and scalp my gp after offering physio which I'm doing offered the above drugs,when I refused she referred me to the neurosurgeons without even seeing me they advised my gp to prescribe the above drug otherwise no other treatment. Doing some research I found that they should do an MRI and that they can inject the area for better results and only as a last resort surgery this would cure the problem but oh no just drug me up. I am so angry how do other people cope with this tendency once you have Lupus for the med profession to fob you off with more drugs.

15 Replies

Not for me either. I just hate them. Had loads of different ones but hate all the effects. I just can’t tolerate even low doses . I would rather put up with the pain than the rubbish from the drugs. Know exactly how u feel x

pmrkitty profile image
pmrkitty in reply to tremarel

I'm the same, no drugs for me.

Hello EHSs ,

I blame the rigidity of NICE treatment pathways. Ask to be considered for a different treatment option , as you have tried drug xxx ( e.g. Pregabilin ) and you couldn't get on with it? Maybe the doctor did not look at your past history in detail?. I try and take as little as possible too.

Best wishes xx

EHSs profile image
EHSs in reply to spzgirl51

Hi yes I explained all this to my gp and reminded her once again that I had tried them before. I have asked and she's agreed to speak to the neurosurgeons again to see if she can persuade them to see me.

I'm intolerant to opioids too and most other things. when I ask repeatedly for help with the pain they just say paracetamol. none of my doctors have offered any alternative other than drugs I can't take

EHSs profile image
EHSs in reply to suzannah16

I have found that the drugs I'm on give me more good days now. But I still have to be careful how much I do and rest etc. Summer was a bit bad I had to increase my Lupus tablets but now able to reduce them . Living in not so sunny Scotland helps. I just need to sort this neck pain now.

suzannah16 profile image
suzannah16 in reply to EHSs

strange because I too live in Scotland and I find I am worse in the winter. More fatigue, more pain and I get a facial rash too. I feel good in the summer. Unfortunately for me the winters seem longer than the summer.

EHSs profile image
EHSs in reply to suzannah16

These autoimmune disease manifest in so many different ways. 😩

Its not good to be on opiates for any length of time as they come with some serious side effects


It's a pity that you can't see a chiropractor on the NHS. Sometimes I think it should be renamed the the big pharma pill pushing service. That's maybe a bit harsh but it seems that if big pharma won't benefit in some way the health service won't cover it. Its all become a bit incestuous. Not at lower doctor level maybe who can only offer the services they are allowed to prescribe, but there are people at much higher levels who decide we should all rely on pharma.

I knocked my pelvis out of position 40-odd years ago (an inch in all three dimensions - I don't do things by halves 😬) and over the years have had instantaneous relief from chiropractors working bones - from my legs to my neck - that had become misaligned because of it, sometimes trapping nerves.

There was the one who tried to heal me by holding her hands over me in a scented candle-lit room while chanting - didn't work 🙄 - but in the main, my experience with chiropractors has been first-rate.

In contrast, my GP shouted 'SCOLIOSIS? YOU DON'T HAVE SCOLIOSIS'...I didn't have the chiropractor's x-ray to hand...😜 xxx

I have sort of decided that I am going to save my pennies and vote with my feet and try some alternative practioners. I will still be under my regular teams but a teacher friend of mine has been seeing a homeopath and only has good things to report so before the winter is out I may be doing similar.

I have been feeling really quite below par for a while and pretty much know what will be offered by standard care and want to see if any other modalities can add anything.

I don't want to just up my drug intake.

It's the attitude of medics that is sending me on my own merry way...fair well on your search for alternatives 💪 xxx

I know what you mean I was given amytriptaline for ankle pain and then gapapentin when I said I had a urine problem , I don't get it I've had discomfort before when passing urine up about 10 times in the night and not been given drugs to relax me before , I didn't take the gapapentin it's still in the packet and I'm taking it back to the hospital pharmacy at my next appointment .

I’m very fortunate to be able to tolerate the opioid type drugs, to the extent of wondering why they are used illegally for a buzz. Fortunate too, that I haven’t had to increase any dose for nearly two years. I have pain, but can manage.

Gabapentine though, turned me into a crazy lady, seeing funny things that weren’t there. I stopped it very quickly, before the fun hallucinations turned nasty or I started believing them. I didn’t even titrate past the first dose.

Every drug tried so far for Raynauds just makes my blood pressure hit the floor. At this time of year I very much which I could tolerate them.

I'm going to make an appointment to see a chiropractor hopefully he might be able to sort my neck out.

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