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You can COVER EVERYONE, but that's a far cry from giving everyone what they want and NEED. We can do better.View Thread

That doc would have to know each dark dirty secret about the skin, the inner mechanisms of ALL the effects on the heart and the CATRILLIONS of side effects that lupus can have on the lungs, kidneys. all the organs.
That is too much for one person to know. No one could EVER know that much and be fluent in it; it's sort of like imagining every spoken language on the planet and being fluent in the language and the culture of each language. That is simply too much to ask of any one human being, though it would be more convenient for us.
More convenient; ah! I wouldn't need to drive 150 miles to see the lung specialist, and the cardiologist, inconvenience myself with tips to tons of other 'eulogists!'
But I think of the question that I'd rather get the best care tat my rheumie has referred me to, than get the good care from my rheumie. I let him steer the ship, but he can't know all about lupus, RA, psoriatic arthritis, plaque psoriasis, Crohn's, osteonecrosis and ALL THE complications of ALL those illnesses.View Thread

I also belong to a support group on yahoo and there are lupus patients. I also have a lupus blog and 'know' online a ton of lupus bloggers who are nurses or in the medical fields and might have a handle on who's good and where! I'm also a nurse and have a few thoughts. AnnieView Thread

AnnieView Thread



You've run into a bunch of nurses, eh? It's hard to be a nurse with lupus because of the pain. I had sjogren's when I was nursing and then about the same time as it became lupus, I stopped working; that was about 14 years ago and I really miss working. And working in nursing.
Have you tried a pain clinic? My rheumatologist referred me to one and had my taking tiny doses of various painkillers, but keeping a level in my blood of the analgesics. It didn't snow me at all. The pain clinic had 2 physicians on staff who worked with a PharmD. The pharmD would make recommendations and the physicians (anesthesiologists, I think) would write the scripts if they believed the PharmD was right (pharmacist ran the show, there!!!)
I hate to think of your trying to work while in pain. Check and see if pain docs can help.View Thread

Because lupus has so many side effecs, no one doc can be a specialists in ALL of the areas. Rheumatologists care for diseases other than lupus (RA, psoriatic arthritis; ALL AUTOIMMUNE DISEASES.)
I see a cardiologist for cardiac complications related to SLE, a pulmonologist who has a specialty in autoimmune lung diseases for my pulmonary complications, an orthopedic surgeon for my ortho complications from lupus. I'd love there to be 'one stop shopping,' and I do. MY RHEUMIE. But, the cardiologist, my PCP, my neurologist, pulmonologist and ortho are are integral parts. In this case, my PCP oversees all, but often, rheumies do.
Then there was rheumatologist with a SUBSPECIALTY in lung disease. I suppose if I felt that my pulmologist wasn't up to the task, but he is.View Thread

Docs often react that way when people read things on the internet, because unfortunately, some people take as GOSPEL TRUTH everything they read on the internet and they the doc is asked questions like, "WHY HAVEN'T YOU DONE THIS?" (When the conversation could easily be:
Patient: "Doc, I was reading this on the internet, could it help,AND IF IT COL'T, tell me why.
The docs who treat lupus patients ARE rheumatologists; your internist can also treat it, but lupus is a disease with a lot of quirks. If your rheumatologist doesn't meet your needs, there may be other ones in your town.
Often the scrips for antidepressants in lupus are because someone IS depressed. I mean, who wouldn't experience a bit of sadness if they were used to one level of activity, then had to abort that one and settle for being so much more sedentary, having to settle for pain on a daily/hourly basis? Depending on the kind of pain, antidepressants can easily be used to treat pain; both psychic and physical pain.
Antiepressants also have another use: they can help sleep and the more sleep you get, the less pain bothers you. So, if your doc gave you a script for an antidepressant, and proceeded to tell you, :take it at night, " he may be using the anti depressand for that.View Thread

The shortness of breath progressed and after ruling everything out under the sun, successive pulmonary function tests showed that since I was negative for everything else: Shrinking Lung Syndrome was the diagnosis at an autoimmune disease lung clinic.
I started Cell Cept in May, my pulmonologist said that in SLE, it works in a few weeks, but in Shrinking Lung, the doc said the EARLIEST he even thinks of looking for results is 3 months. In the meantime, my anxiety level is sky high, my SOB continues to progress and just a short shower does me in for 1/2 hours.View Thread
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