history

for the past 10 years i have been living with do i have do i not have lupus, i have an excellent rheumatologist who started me on hydroxychloroquine, with good results, i suffer the following repeated pericarditis, episodic cardiomyopathy, severe joint pains, mouth ulcers, vasculitis, ulcerated urethra, renal pain, oesophageal dysmotilty ( had major surgery for this), regular low whte cell count, and lymphapenia, medics argue that becuase my ana does not come back as expected with lupus patients I cannot have lupus, my consultant has stated, this is not unusual in a male, but trying to convince juniors when Im admitted with infections is so difficult, Im getting quite sick now and its taking longer to recover from each event. Thoughts anyone.

2 Replies

oldestnewest
  • I have similar symptoms to you, i have only recently been diagnosed when my last blood test showed ANA at 1.320 and a strongly positive ds DNA along with low complements, however it has taken around 3 years for my bloods to show this, previously they only showed anemia and high esr. The strange thing is when i had these last lot of bloods i felt better than i had done for a while and yet they showed high disease activity?

    I also get renal pain which is constantly ignored by my rheumy who says that lupus does not cause pain in the kidneys and that the damage is silent? but i get pain and tenderness at the back of my ribs on both sides

  • Hi medic, why not ask for a referral to the st thomas lupus centre to try get a proper diagnosis. It might even be worth paying for a private consultation even your rheumy won't refer you. Remember though your always entitled to a 2nd opinion even if you have a good rhemy and just want some extra reassurance. I've known I've had lupus for many years with the joint pain and typical butterfly rash across my face but nothing showed up in my bloods. On going to my gp in cardiff I was told it was rosacea and to lose 3 stone then have a boob job on the nhs then my pain would go and was sent home with a pack of diet pills! Since moving to pembrokeshire my care has been fab and now regularly see my rheumy and neurologist as I have brain involvement to now. My ana isn't always raised even now though and when it. Is it dosent seem to reflect whether I'm on a flare or not. Totally understand your frustration at your mix message diagnosis just put it down to another complication of having lupus nothing is ever straightforward!

    Fingers crossed your on a well phase, stay strong keep smiling and just think this is your lot that you've been allocated in life so make the most of it on the days thhat you can :-) x x

You may also like...