So fed up with different drs saying different things. Have many symptoms that indicate Lupus never been caught in blood recently had a positive ANA but no specific. I have a mother and another close relative with SLE so my Rhumy says I need to be closely monitored. Some Drs say I have SLE just never caught it in my blood. When I have flares by the time I get to the Dr or blood test the main flare is over. Has anyone else had this problem I woonder.

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  • I have had the same problems.My GP seems to know very little and if I do get referred back to reumy,the worst is usually over.I have got to the stage where I really do try to deal with it all myself.Of course ,this is not always possible.One minute my bloods are up then they are down.If I only new what caused these flares.I am hoping this course of hydroxychlorine will help.Good luck.

  • I hope it works for you unfortunately I came out in rashes head to foot so had to come off it.

  • I have had five years of the same thing. But with the positive blood tests last 3 rheumy visits and still only a probably lupus sle. My rheumy has said that she would rather not diagnose than to give a wrong diagnosis. Hope you are at least getting treatment that works for you.

  • Interesting mrschewie that is exactly what my rheumy said. It sounds as if we are in the same boat.

  • I know its a pain,it took 2 years for them to say's its SLE that was 20 years ago and still people have the same problem.It is a complex

    To me iwas relived when i was told ,as you belive they think you are making it all up.

    Perhaps next time you feel you are in a flare as your GP to take the blood test

    as you get to your GP quicker than Rheumy

    Hope this helps

  • Hi, it took 10 years for me to get a diagnosis. I agree with janiceray, next time you feel a flare coming on ask your gp for a blood test and for the results to be sent to your consultant. Our hospital has specialist rheumy nurses who have a hotline and are fab. Check to see if you have something similar, as they can offer SOS appointments.

  • Thanks for all you support and comments. We have the same a specialist rheumy nurse it can take a couple of days to get back. it can take 3/4 days just to get to see a GP then 2/3 days to get a blood test. Last time I went to the hosp due to flare saw a locum consult who injected me with a steroid without my consent so trust is a big issue at the moment. Due to have a meeting with hosp as it is quite serious what happened. Especially as I was unwell after the injection. It has taken me 20 years to get this far as my initial diagnosis was ME

  • I so understand - going through the diagnosis process is a nightmare as I am there in that long dark tunnel of a journey!- I have been in the "probable sle" category yet being treated medically with anitmalarials for Lupus although not fully diagnosed for the past 3.5 years. My Rheumatologist consultant has changed over the years which hasnt helped the consistency of views but I look upon it in a positive light and see it as a second opinion. Albeit frustrating and ticking a fair amount on the American listing as well as the Prof Hughes diagnosis listing I've been told that as I dont have major organ damage only then will they consider a diagnosis........suppose I'd rather live in limbo with a possible rather than have organ failure but you just dont know - its the uncertainty which is the killer and although I know getting a diagnosis wont wave a magic wand and my drug treatment would change or be cured it would help me face people and tell them 100% that I have a diagnosis and that its not in your head!

    I've found medics dont want to put their necks on the line unless you tick all the boxes as there are so many cross over symptoms and a misdiagnosis can do more damage than good sometimes

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