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Hi,

I have 7 of the 11 so called indicators for Lupus, with the exception of the blood tests. These have always been corrupted because I am on warfarin. I have taken pictures of the rash on my face, which is controlled by steroids. I am having to come off the steroids because I have been on them for 2 years. They have caused my adrenals to fail, yet as the dose reduces my symptoms return. But still my Rheumatologist refuses to agree that it is lupus. I have been diagnosed with Temporal arteritis and Fibromyalgia. This has been going on for 4 years now. I have managed to convince them to put me on heparin and retake the blood clotting and ANA'a etc. I am really at the end of my tether. Any advice would be welcome.

Les

3 Replies

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  • My only suggestion is that you need to get hold of your Dr and tell him/her that they need to do a biopsy on your rash.

    If you are not getting any joy with your Dr then change Drs, if that is not possible, submit a complaint to the NHS about your Dr not listening to your requests, rock the boat as much as you need to, to get the treatment you need.

    Too many people are scared to rock the boat and make a noise, we are ill and the drs need to listen to our concerns. You can PM me if you want as I am always around here...

  • My Lupus was eventually diagnosed through a skin biopsy so I agree you should definitely ask for it to be done. I don't know if it is helpful or not but I was misdiagnosed with ME/MS first, ask your doctor to rule ME out especially as the symptoms are extremely similar to Lupus. Good luck xx

  • I had all the symptoms of lupus but only one positive test result my local hospital made me feel like a hypochondriac !!!!! It took nearly 20 years before I got a diagnosis of sle and I have to travel 53 miles to see my lupus specialist without him I don't know what would have happened to me !!!

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