4 ms·

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

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.

stephen_g 4y ago
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).
- ranger_danger 4y ago
  You can get also get an ANA test for lupus.
  - FollowingTheDao 4y ago
    An ANA can be negative even if you have Lupus. It is rare, but his is one the the problems? Is it rare because it is rare or because they are not testing for it? https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ "In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies." The current protocol is that if your ANA is negative they will not look any further. See figure 2: https://ard.bmj.com/content/78/9/1151 https://ard.bmj.com/content/78/9/1151
aksss 4y ago
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).

stephen_g 4y ago

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).

ranger_danger 4y ago
You can get also get an ANA test for lupus.
- FollowingTheDao 4y ago
  An ANA can be negative even if you have Lupus. It is rare, but his is one the the problems? Is it rare because it is rare or because they are not testing for it? https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ "In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies." The current protocol is that if your ANA is negative they will not look any further. See figure 2: https://ard.bmj.com/content/78/9/1151 https://ard.bmj.com/content/78/9/1151

aksss 4y ago

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).