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A Spanish teen’s genome may hold the secret to lupus

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Re: A Spanish teen’s genome may hold the secret to lupus

#21

Post by insaider »

valtism wrote: post #18

I'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 a day or more and then undoubtedly i'll struggle for a few days after that. Which points to alcohol's suppressive effects on the immune system.

I really really hope this, and similar research[1], turns into something tangible

[1] https://med.stanford.edu/news/all-news/2019/04/biomarker-for...

Re: A Spanish teen’s genome may hold the secret to lupus

#22

Post by _0w8t »

resonious wrote: post #8

My 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.

Re: A Spanish teen’s genome may hold the secret to lupus

#23

Post by actually_a_dog »

PragmaticPulp wrote: post #9
resonious wrote: post #8

My 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…

Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore t…

I have to say that this is exactly why I like having Kaiser as my health insurance. Because Kaiser is also my healthcare provider, if I need to see a specialist, all it takes is a referral from my PCP or any specialist I'm currently seeing, and it's done. And, they practice evidence-based medicine to the extent that's possible, which means that treatment decisions tend to be pretty reasonable. My PCP refers out whenever there's anything outside her expertise.

I know it sounds like a massive conflict of interest to have one's physician working for one's insurance company, but, somehow, it really seems to work and work well, bypassing those failure modes you mentioned entirely. I've gotten in to see specialists within a matter of a couple of weeks whenever I've needed it.

Re: A Spanish teen’s genome may hold the secret to lupus

#24

Post by oneoff786 »

bagels wrote: post #11
resonious wrote: post #8

My 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…

What is in a Lupus patient's chart that causes doctors to think they are drug seeking?

Pain, most likely

Re: A Spanish teen’s genome may hold the secret to lupus

#25

Post by resonious »

bagels wrote: post #11
resonious wrote: post #8

My 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…

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.

Re: A Spanish teen’s genome may hold the secret to lupus

#27

Post by DoreenMichele »

behnamoh wrote: post #17

When I see headlines like this, I ask myself: "Is it really necessary to include the nationality of the person if that has nothing to do with the matter at hand?" In this case, a better title would have been "a teen's genome may hold ...".

For anything genetic, mentioning ethnicity/nationality is potentially relevant.

Some genetic disorders are predominantly found in certain populations. Cystic Fibrosis is predominantly Caucasian. Sickle Cell is predominantly (or perhaps exclusively) African (ancestry). Etc.

Re: A Spanish teen’s genome may hold the secret to lupus

#28

Post by stephen_g »

resonious wrote: post #25
bagels wrote: post #11

Earlier 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.

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).

Re: A Spanish teen’s genome may hold the secret to lupus

#29

Post by sprucely »

actually_a_dog wrote: post #23
PragmaticPulp wrote: post #9

Earlier quoted context omitted.

Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore t…

I have to say that this is exactly why I like having Kaiser as my health insurance. Because Kaiser is also my healthcare provider, if I need to see a specialist, all it takes is a referral from my PCP or any specialist I'm currently seeing, and it's done. And, they practice evidence-based medicine to the extent that's possible, which means that treatment decisions tend to be pretty reasonable. My PCP refers out whene…

I wish I had your experience with Kaiser. I've hit that conflict of interest multiple times. Most recently, after going through triage and waiting six weeks for an appointment, and after half way through it with [specialist], I learn that they're actually not the specialist I thought I was getting and just performing triage. This person lacked even basic knowledge on the topic, and none of the classes or groups she can find actually address the issue in question. When our time is almost up she finally decides to lookup a specialist. There's only one available with only one date available in another couple months. But she's only looking in one geographical region because she doesn't have access to data for the other region that can also serve us. If I book this appointment, she informs me I won't be able to find another specialist in the other region because a patient can be assigned to only one specialist. So it seems data actually is integrated across Kaiser's "regions", but only so far as to support their bottom line.
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