I wonder how many people are aware of lupus due to the TV show House?
It's never lupus
A Spanish teen’s genome may hold the secret to lupus
31–40 of 79 posts
Re: A Spanish teen’s genome may hold the secret to lupus
#32Re: A Spanish teen’s genome may hold the secret to lupus
#33Earlier quoted context omitted.
What is in a Lupus patient's chart that causes doctors to think they are drug seeking?
The sibling comment is correct. Lupus gets you access to all kinds of schedule 2 drugs that some people really get a kick out of. Not to mention, there's often no outside "proof" that someone's immune system is attacking them. A normal looking person walks in and says "hey I have Lupus" and the docs can't really do anything but give them pain pills.
Whaaat? Not sure what doctors you see but SLE does have a test battery that includes blood work and the presence of other shitty but objectively possessed symptoms like pleurisy. Many people with diagnosed lupus will tell you of the hard and stressful journey they went through to eventually get the diagnosis (because it’s rigorous and rather specific). The drugs that lupus patients get access to aren’t the kind you “get a kick out of” - meloxicam, hydroxychloroquine, prednisone, and it gets worse from there, e.g. methotrexate and other immunosuppressives. Lupus sucks balls, and the meds are almost as bad other than the fact that they keep you from dying early. I’ve never heard of a doctor that would take a self diagnosis of lupus seriously, much less do that and hand out prescription pain killers (assuming that’s what you’re alluding to). It would be like walking in and telling a doctor you had cancer and needed oxycodone to treat it: doc’s gonna have some questions and want to see some data first (hopefully).
Re: A Spanish teen’s genome may hold the secret to lupus
#34Fantastic news, and I'm very glad to see it at the top, but but poor writing IMO. The quote from the ANU researcher about "showing for the first time how ..." links to a 2019 article, and this makes it difficult to distinguish what within the piece is new information and what isn't.
Re: A Spanish teen’s genome may hold the secret to lupus
#35I've been quite interested in auto-immune diseases lately. I have a friend with fibromyalgia which latest tests[1] have shown to potentially be an auto-immune disease. The symptoms are similar to lupus, and also similar to what I hear people report as long covid. I don't have a background in medicine, but these all seem related and are all poorly-understood and treated. It is frustrating to watch as those affected ha…
I've been struggling with the same sort of thing for 8 years now. I've been to dozens of doctors in several different countries but never got a proper diagnosis. From my own research and observations I'm quite confident it is, as you elude to, an auto-immune related disease. The two major triggers for me are exercise; particularly anaerobic e.g weightlifting, and alcohol. Alcohol actually alleviates the symptoms for…
I'm in the same boat. My main problem is atypical facial pain and I don't have a solution after visiting several neurologists and other specialists
Re: A Spanish teen’s genome may hold the secret to lupus
#36Earlier quoted context omitted.
Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.
They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they do…
This is my experience. They can be good emotional support resources but often develop an orthodoxy unsupported by science and enforced through shaming/berating (e.g. people with lupus shouldn’t drink orange juice or supplement with vitamin C, and similar nonsense).
My advice is read all you can to thoroughly understand what’s happening to you - The Lupus Book by Dr. Wallace, The Lupus Encyclopedia by Dr. Thomas are two great compendiums and candidates for Kindle. Then find support resources that look at the condition as something that can be and should be managed, eschewing the mesmerizing appeal of self-pity and one-upsmanship with symptoms.
The fact is that managing lupus puts a higher priority than normies have on diet, fitness, sleep, mental and physical stress management, and UV exposure. Ordering your own blood work - understanding the tests that are valuable and how to diagnose results is also a good practice for taking charge of your condition - i.e. what are the early warning signs that my kidneys may be “silently” failing; what are my baseline CBC numbers, specifically white blood cells, and can I provide those to a GP/PCP on the fly; etc.
Social media, I found, doesn’t really advance what is mostly a solo journey to preserve function through daily mental and physical discipline. However, another thing I’ve come to appreciate is that most (healthy) people don’t enjoy listening to stories about medical problems, and if you just need to tell your story and get some brief positivity and empathy, online groups can fill that need.
Re: A Spanish teen’s genome may hold the secret to lupus
#37Earlier quoted context omitted.
The sibling comment is correct. Lupus gets you access to all kinds of schedule 2 drugs that some people really get a kick out of. Not to mention, there's often no outside "proof" that someone's immune system is attacking them. A normal looking person walks in and says "hey I have Lupus" and the docs can't really do anything but give them pain pills.
The inflammation associated with Lupus should show up in blood tests (CRP and ESR) while it's flaring, as it does in other autoimmuine diseases. (Those markers are super non-specific and all sorts of things can raise them, but it is a measurable data point).
You can get also get an ANA test for lupus.
Re: A Spanish teen’s genome may hold the secret to lupus
#38My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…
Western health care philosophy is just so terrible for these classes of diseases that are just not well understood.
The immune system is not understood well at all, but western medicine does have quantifiable success in treatment of lupus. In the 40’s or 50’s, scientists/clinicians tracked a cohort of representative lupus patients and within two years of diag most were dead. Today lifespan has been greatly extended, protecting the organs being a big advance. IF you have lupus, and IF you get diagnosed, and IF you can afford proper prophylactic drugs and IF you manage your diet, exercise, sleep, stress better that you ever used to, you can usually manage it and hit old age. The western lifestyle is a bigger impediment to health than western medicine.
Re: A Spanish teen’s genome may hold the secret to lupus
#39Re: A Spanish teen’s genome may hold the secret to lupus
#40My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…
Such a sad story. With women the experience is typically worse on average when they talk to doctors as the doctors even female one trust them less than male patients. Even feminists advise to go to a doctor with a husband or male relative or friend and let them do the talking.
I'd never heard that, but it sounds to me like the other side of the same coin regarding what's commonly said of men: that they delay going to the doctor for too long as symptoms progress, or even don't go at all unless insisted upon.
It could be that, on average, doctors become accustomed to the idea that when a man visits them it must be very serious, and therefore when they are visited by women they generally display milder or less obvious signs and symptoms by comparison (again, on average). Hence, doctors may get the impression that women are more hypochondriac than men when the fact of the matter is actually the inverse.