Aa
Should I question my lupus diagnosis?
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.
Non-smoker, non-drinker
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.
'2016 (march-august)
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
No COPD.
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.
Positive SSB
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?
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.
Non-smoker, non-drinker
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.
'2016 (march-august)
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
No COPD.
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.
Positive SSB
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?
Hmm your seizures could have been due to complications arising from an undiagnosed pulmonary embolism variant which was dismissed at the time
(many cases of PE are notoriously difficult to diagnose), likely caused by factor V Leiden.
At any rate, if you look at the diagnostic criteria for Lupus, you haven't met the minimum for a clear Lupus dx.
My opinion is that at this point a Rheumatologist should consider giving only a suspected Lupus diagnosis, while investigating further and keep monitoring your WBC and CBC markers.
In addition there a couple things to consider:
-Your ability to detoxify may be impaired and I would seriously look into
genetic mutations, which have to do with detoxification, specifically methylation issues (which lead to numerous impairments and dysfunction). One of the most common mutations are the C677T MTHFR and the A1298C MTHFR mutations.
Genetic testing would be recommended.
- Thyroid function should be thoroughly checked by doing Free T3, Free T4
and Reverse T3.
The thyroid besides all the important functions it has, is also responsible for clearing cellular debris and toxic waste from the body, by means of activating the enzymes involved in this process.
When it comes to cellular repair/maintenance/healing without adequate thyroid function, everything lags in proportion to the thyroid hypo-function.
While I'm here, something I should mention, is that when I had been studying Dr.Barnes work (one of the top thyroid doctors ever), one particular finding stayed with me.
From ALL the thousands of patients he treated for hypothyroidism
(using natural desiccated thyroid ) NONE of these patients developed Lupus.
The ones who had been already diagnosed with Lupus, none developed any new signs of of organ involvement, while being treated by Dr. Barnes for hypothyroidism (type 1 and type 2)!
In addition to the above you may want to consider a trial of transdermal magnesium oil for 3 months and have your vitamin D levels tested along with methylocobalamin B12 levles (ask for MMA test x 2-repeated) since the standard tests only check for cobalamin B12 which needs conversion.
I hope this helps.
Best wishes,
Niko
(many cases of PE are notoriously difficult to diagnose), likely caused by factor V Leiden.
At any rate, if you look at the diagnostic criteria for Lupus, you haven't met the minimum for a clear Lupus dx.
My opinion is that at this point a Rheumatologist should consider giving only a suspected Lupus diagnosis, while investigating further and keep monitoring your WBC and CBC markers.
In addition there a couple things to consider:
-Your ability to detoxify may be impaired and I would seriously look into
genetic mutations, which have to do with detoxification, specifically methylation issues (which lead to numerous impairments and dysfunction). One of the most common mutations are the C677T MTHFR and the A1298C MTHFR mutations.
Genetic testing would be recommended.
- Thyroid function should be thoroughly checked by doing Free T3, Free T4
and Reverse T3.
The thyroid besides all the important functions it has, is also responsible for clearing cellular debris and toxic waste from the body, by means of activating the enzymes involved in this process.
When it comes to cellular repair/maintenance/healing without adequate thyroid function, everything lags in proportion to the thyroid hypo-function.
While I'm here, something I should mention, is that when I had been studying Dr.Barnes work (one of the top thyroid doctors ever), one particular finding stayed with me.
From ALL the thousands of patients he treated for hypothyroidism
(using natural desiccated thyroid ) NONE of these patients developed Lupus.
The ones who had been already diagnosed with Lupus, none developed any new signs of of organ involvement, while being treated by Dr. Barnes for hypothyroidism (type 1 and type 2)!
In addition to the above you may want to consider a trial of transdermal magnesium oil for 3 months and have your vitamin D levels tested along with methylocobalamin B12 levles (ask for MMA test x 2-repeated) since the standard tests only check for cobalamin B12 which needs conversion.
I hope this helps.
Best wishes,
Niko
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