Everytime I have seen a rheumy, they either go 'well your test could be other things too'. Even though my SLE labs have been consistent since 2004. Or, I'll tell them about my flare ups and I explain to them it's like the flu (or I tell them it has been called Lupus Flu). So it's not just about pain!!! I feel like I have the flu on top of it! Does anyone else have this and how do you get them to understand you? No medications yet, allergic to Prednisone and other drugs so this should be interesting. The only one on my side is my PCP who is like 'If it says LUPUS SLE on the lab reports as positive then that is what it is!! What is the problem with these guys?" LOL!!!
And they say I don't have the malar rash. I think Toni Braxton (who is beautiful by the way) was also diagnosed with SLE and I do not see any malar rash on her! So I don't know.
So sorry you are going through this. I don’t have the malar rash either. I do however have the rash on other parts of my body like arms, chest legs, abdomen. And I get erythema on my face. Don’t give up, keep bring persistent with your new rheumy. If he won’t listen, find another.
Good luck!
Cheryl
Finding a good doctor is hard. If he doesn’t listen I agree get a new one. Find a lupus support group at a medical university or in your area through any lupus support group and get a recommendation. I find drs 60 percent of the time have no clue what they r doing about any disease and I’m a nurse! Keep looking!
Sounds like what's happening to me. What a mess, sorry that you are going through this. I've read that lupus doesn't always cause a rash so why haven't these experts read the same thing?
I would try a different doctor too. Can your PCP just take care of everything? They really need to train doctors about lupus and understanding in medical school!
I so feel your pain. I think rheumatologists are very hesitant to diagnose someone as SLE lupus. I don’t know why this is so difficult for them. I agree with everyone else you have to keep looking until you find a good rheumatologist. I really hope it works out for you and that you find a good doctor. Don’t give up until you do.
Rheumatologists go by blood results. Here is the criteria on which doctors base their diagnoses for 2014 (I cut and copied it):
Doctors use the American College of Rheumatology’s “Eleven Criteria of Lupus” to help make—or exclude—a diagnosis of lupus,
Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.
The “Eleven Criteria”
Malar rash: butterfly-shaped rash across cheeks and nose
Discoid (skin) rash: raised red patches
Photosensitivity: skin rash as result of unusual reaction to sunlight
Mouth or nose ulcers: usually painless
Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
Neurologic disorder: seizures and/or psychosis
Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test.
Jane thanks so much for putting that out its really good information. I would add that the four or more criteria do not have to be present all at the same time. That’s why it is important to get any criteria documented so that as things progress you can be diagnosed appropriately. That being said I have met the four or more criteria and was still not diagnosed with SLE lupus by one rheumatologist. When I went to another rheumatologist I was diagnosed as SLE lupus. So having the right rheumatologist is really important.
Yes, it took me 8 years and 3 rheumatologists (widely spaced). They used to avoid diagnosis because the dx makes you uninsurable, though the Affordable Care Act changes that. I had chronic fatigue dx, which also meant I could never chnge insurance.
In looking at your list of criteria I find I have met all 11 criteria, yet it took years to get a diffinitive diagnosis, I was told everything from Mixed connective tissue disease to epstein barr virus before a doctor finally said oh this is SLE no doubt about it I guess the right rheumy is the key.
They still avoid the diagnosis. I feel almost like its like they hold it out like a carrot
Which its not, or at least a very nasty carrot. But when you’re desperate for a diagnosis so that you can get the proper treatment it does seem as though some doctors make it very difficult. And I really still don’t understand that
Wow,.thanks all for the tips. I see this new doc in November. ALL. of my tests come back with the same thing. I would think after of ten years of consistent positive Lupus tests, they should say yes you do have lupus. Good grief.
Thank you so much! I see him next week. I know it has affected my kidneys at one point, and my liver in 2012 (I lost almost 25 lbs in one month, plus the smooth muscle antibody (?) was highly abnormal). Bleah... :-) rebeccainla said:
Pyxie, I was just thinking that I only had a bad mylar rash about 2 years ago. A lot of people never have it.
I had Hepatitis B about 40 years ago and lost 30 lbs. in a month. They never did figure out how I got it, maybe it was from the lupus I didn't know I had until later?? My lupus tests have come back negative for the last few years, but that doesn't mean anything either. At least your PCP understands. Good luck with the new doc and let us know!!
I definitely will!!! I just wish I remembered the dermatologist who did a biopsy on my hair loss a while ago. He took the biopsy and said 'I doubt this is due to Lupus'. I came back and he didn't look so smug anymore. He said 'You have Lupus'. Grrrrr.....Friday is the day!