Hi, I've been feeling unwell for 16yrs and diagnosed with lupus and aps. My ana weakly positive and lupus anticoagulant positive and anticardiolipin antibodies positive and anti Ro positive previously but now negative . I have pain and fatigue amongst other problems. Have been on treatments a while now on azathioprine and hydroxychloroquine which doesn't seem to be helping too much. Hydroxochloroquine did however help a few yrs ago.
My thing at the moment is and I know it's probably stupid is that I'm worrying that I haven't got anything wrong with me really and that's why the drugs aren't working?! And I'm scared of taking more incase I don't really need them cos there's nothing really wrong.
I sometimes feel maybe it's just in my head the pain etc?!! My partner just thinks I'm mad I think, he says they haven't got it wrong but I think I'm just really scared at the moment and don't know what to think.
I know this is a really bizarre post and probably won't get any response!
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Sara_A
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You are not alone. I too am in the denial phase. I know there is something wrong but not convinced it is the lupus my rheumatologist has said. I am positive for lupus antibody but negative ana.
Have decided to completely change my lifestyle and hope that i can manage without all the scary drugs. My main problem is joint pain and fatigue so i am keeping my fingers crossed.
I think our bodies get used to some drugs over time and so they dont work as well. If you can bear it would you be able to take a drug holiday for a week or two. Over the years i have found it seems to reset my tolerence to drugs and so they seem to work better. Weird? Maybe its all in my head though.
I have a love/hate relationship with medics. I find it difficult to trust what medics tell me as i have had years of being fobbed off and given pills which were totally wrong for me.
Can you ask your rheumatologist if there are any new drugs which might work better for you?
I was sort of in denial when I finally got a DX because it took so darn long for these American doctors to diagnose me.I suffered for YEARSSSSS and my tests would be mildly pos, neg..Whatever..But I don't base too much faith on doctors and tests, not in the US anyway. FINALLY I got a dx in around 2001 or 2003.. ( brain fog ),, But after the dx , which I was so relieved to get because I finally had validation (which I realized I don't need from a dr or anyone), I went into this "they were wrong so long, took so long to get a dx, they are probably wrong now, they are incompetent, the tests aren't accurate, are they?" faze..Sometimes I still wonder, even after the pos tests and all if I wasn't misdiagnosed (because the connective tissue diseases overlap and mimic each other), but deep down I realize I do have lupus.I have psoriatic arthritis also.I went a different route over the last few years..No rheumy..Don't want one.Mediocre GP..Don't care..Dumped most meds..Steroids, pain meds, some other stuff, but nothing invasive.Have pettichae..Blood count ehhh..Could be better..But then hey, could be worse, right?
You are not alone in your thoughts..They are normal. .You also are not mad..
As far as test being negative sometimes, and pos other times...I was told this by my GP..He said autoimmune diseases overlap, are hard to pin down, flare then can go into remission (even if you feel very well, or very crappy)..He said ALOT of the tests don't show positive unless you are in an active flare, that's why the inaccuracies in them. He said you could get a test done on a Monday and be neg, get the same tests done same week on Friday and be pos.Doctors need to base more of their diagnoses on patient symptoms instead of just tests..Wishing you a lovely day. ♡
So... I've seen the rheumatologist again yesterday and told him of my worries! Basically that I was thinking if the azathioprine isn't working maybe I didn't have lupus, he went thru all my bloods etc and assures me I do have autoimmune disease. And the reason the crp is normal and there is not usually and swelling of my joints is because that's how lupus is.
So think I feel a bit better to accept it! I was diagnosed with lupus and aps about 7 yrs ago! Just think I'd had a blip recently.
He's increased aza dose so fingers crossed I will start to feel better really hope so this flare has been 8 months now since my 2nd baby was born!
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),, But after the dx , which I was so relieved to get because I finally had validation (which I realized I don't need from a dr or anyone), I went into this "they were wrong so long, took so long to get a dx, they are probably wrong now, they are incompetent, the tests aren't accurate, are they?" faze..Sometimes I still wonder, even after the pos tests and all if I wasn't misdiagnosed (because the connective tissue diseases overlap and mimic each other), but deep down I realize I do have lupus.I have psoriatic arthritis also.I went a different route over the last few years..No rheumy..Don't want one.Mediocre GP..Don't care..Dumped most meds..Steroids, pain meds, some other stuff, but nothing invasive.Have pettichae..Blood count ehhh..Could be better..But then hey, could be worse, right? 
Weird lupus flare including burning when I pee and sore throat 
*warning* Weird rash picture
weird blister type rash?
