St Thomas Lupus Trust
1,153 members • 117 posts

Lupus HELP

Hi. Can anyone please help. I have been ill almost continuously for 12 years, lost most of my beautiful hair, which has never grown back 😢 I have pain in my back & hips (16 years), neck, hands, I have severe acne as well as dreadfully sore facial blemishes which come and go. I have fatigue so bad, I can barely stand/walk at times, I suffer periods that are beyond painful, and inconvenient to the point I can't leave the house for the first 3 days. I was accused of attention seeking and being lazy for the first 11 years, and "cutting my own hair off" because there was NO medical reasons for my symptoms! I was told I must be "very bored with my life to keep saying I'm ill"-- no I WAS ill, I have better things to do with my life, than pretend to be ill, when I'm not! Anyway, last year after I made legal threats, I was eventually allowed tests. A biopsy result confirmed inflammation and my blood results showed Lupus antibody. Still, no effective treatment!!! I am beyond desperate, I am depressed that at 43 years old, I am nothing more than a hideous head on a crumbling body of bones. I am in a constant state of illness with NO let up. I take a bare minimum dose of Quinoric but I would like to know the name of steroid medications so I can ask for them. I am done being friendly with the NHS and I'm going to demand proper, constructive treatment, I think I at least deserve to have hair that grows. Thank you in advance.

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My sympathy on all counts. Have you actually been referred to a LUPUS Specialist by your GP?There are Rheumatologists who are still reluctant to prescribe steroid medication because of the side effects. My advice would be to sit down with your Doctor and discuss your options- all of them. Even at St Thomas' Lupus Clinic it took several goes to get the right combination of drugs suitable for my needs. That's the nature of Lupus though, what suits one patient may be wrong for another. I know you must be really fed up, but hang in there. St. Thomas' Lupus web page is very good. There are medicinal treatments other than Quinoric and a good Clinician will find what works for you.

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Hi. Thanks for your reply. I am currently seeing a dermatologist, my blood results keep coming back as 'normal range' although I'm clearly very unwell, with a positive biopsy result. So, no Lupus professional for me. They are obsessed with trying to prescribe me antidepressants though, no thanks! But at least they don't call me a liar anymore. 😢


I agree with Twdibwd the London lupus centre site is very good. There are a large number of medications available and getting the mix right takes time. I don't know where you live but ringing NHS rheumys who treat lupus well is hit and miss if you could afford a one off private meeting at the lupus centre you could then go back to NHS. Good luck


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