I have recently been diagnosed with SLE, and take imuran prednisone, and plaquenil.
I am also on 2L of supplemental oxygen for "respiratory failure" i.e., my oxygen saturation randomly drops to the mid-upper 70's.
I feel like I am going through a lot of treatment, and see many doctors, but I'm not convinced that I REALLY need to.
I'll *try* to give the shortest version of my med history leading up to the diagnosis.
I'm 34 (F)
5'5" 132 lbs.
1997- seizures, unknown cause, tested negative for epilepsy (EEG).
1998- discoid rash on abdomen, diagnosed as sun induced (mono nuclear).
'05- stillbirth at 39 weeks due to two infarcts in the placenta.
'05- spleenomegaly; hydronephrosis, 98.6% absolute lymphocytes- MISDIAGNOSED with lymphocytic leukemia.
'05- diagnosed factor v leiden
'15- abnormal EKG (poor r-wave progression)- repeated after 6 months with the same result, so I was sent to cardiologist.
During stress test, my o2 dropped immediately to 76% and STAYED there for 11 minutes. The tech didn't see the sat number, so they sent me home to follow up with the doc a week later. I called the doctor's office after 3 days because I was feeling tired and out of breath, but thought maybe I was getting the flu, so I agreed to stay home and take it easy. 3 days later, the cardiologist called me and told me to go straight to the ER, because based on my stress test, she believed I had a pulmonary embolism. She faxed over my paperwork to the ER, and I had to go through a TON of tests angio CT, x-rays, blood, ekg... No embolism, though the ER doc thought there WASNT and embolism. Hmmm.
It was during this hospital visit that the doc found "very, very hyperinflation lungs".
I went back to my cardiologist and repeated the six minute walking test, and the number dropped to 84%.
She called a pulmonologist in front of me and sent me to be seen in her office. Sent me for anot echo with a bubble, right heart cath, etc. Everything seemed to be okay.
Repeated o2 walking test: 76%.
Pulmonary function test was okay.
I was then sent for a VQ scan-and that was okay.
No alpha 1 anti-tripsin
My o2 is PERFECT when I am still, it only go down when I begin walking.
She believes that I have early stage pulmonary hypertension, and has sent me to UCLA for an exercise cath, since the r. Heart cath wasn't useful.
Additionally, my pulmonologist saw that I was swollen at my appointments and started checking my fingers and face each time. Also, the tops of my feet and my finger nails were blue so she thought I had raynauds. She ran an autoimmune panel and sent me to a rheumatologist (who in turn, ran more tests).
The rhuematolgist diagnosed me with lupus, despite the negative ana. It just doesn't feel right.
*He also said I DO NOT HAVE raynauds or sjogrens.
I am ANA NEGATIVE.
Indeterminant ds-DNA antibodies (8)
Low c3 and c4 complement proteins (downward trend over 6 months)
Low white blood cells 2.5
(downward trend for the last year)
6 tests; each subsequent test was lower than the previous test; all done at the same lab.
Low absolute neutrophils 1280 trend
Low platelets- trend
Low red blood cells - trend
Steady increasing trend over the last year in AST and ALT, now near max upper level limits.
The thing is, 6 weeks after starting plaquenil, imuran and prednisone (15mg), my complement levels went down lower, as did my wbc, and my ds-dna went from 5 to 8.
My rheumatologist isn't sure if it's a medication side effect or "disease progression", so I have to do blood work every 2 weeks now. It seems like there is something else going on but all of the other autoimmune test were negative. My rheumatoid factor is only 11. No scleroderma, no other issues.
Side note, I passed a LOT of blood in my stool along with mucus. I took a pic because I was so freaked out and didn't know how to explain it. My GP thought it was a bleed in my stomach, possibly caused by a virus and inflamation, and sent me to see a Gastro. Ugh!!!
My question is, should I accept lupus as a diagnosis, or should I look for an another cause?