3 ms·

Not all autoimmune conditions show up in bloodwork, and sometimes they only show up when they’ve progressed to the point of organ damage. Typically this lack of

Not all autoimmune conditions show up in bloodwork, and sometimes they only show up when they’ve progressed to the point of organ damage. Typically this lack of positive tests is used to invalidate the experience of people with those conditions (usually women). This often seems to come from the implicit assumption that we know all the physiological markers and mechanisms of autoimmune disease, when nothing could be further from the truth. We know very little, and how a patient feels matters.

aksss 6y ago
I’ve met people with “all the markers but one” and thus never get a neat diagnosis of a known disease, and it’s very devastating to live with that kind of an unknown where doctors have so few answers or cures (not that they have all that much more with known AI diseases, but it’s more comforting to be bucketized than most people know). For lack of better solutions they can get put on daily prednisone for months (or years!) which causes a wholly different set of health challenges to manage the first. It can be very hard for folks walking homeless through a desert of autoimmune knowledge. Often my advice is, “what would you do if you had that last marker? Adopt a lifestyle as if you did: watch your food intake, do gentle but regular exercise, get plenty of sleep, reduce mental and physical stress, avoid excess (sun, drink, food, etc).” I’ve yet to meet anyone with a neat diagnosis that wants to be on immunosuppressive drugs, so even these folks must strive to manage their disease through disciplined lifestyle changes. I also understand the need for doctors to be measured in their diagnosis, so I don’t begrudge them for following protocols established for disease qualification. I don’t think of it as invalidating experiences of patients (though it can feel that way to patients) but everyone is aware of those that want a diagnosed health problem, and to a more frequent extent, those that want a tidy answer to their experiences even if there isn’t one. Denying a diagnosis of a known disease is not denying a diagnosis at all.
- treeman79 6y ago
  Lost a year due to this. Had to push hard for further testing. Plus just trying the treatment. Had a big positive response. If I hadn’t pushed they would have just had me come in once a year to “check”. One of the factors that got me a diagnosis.
- alach11 6y ago
  There's a huge benefit to getting a specific diagnosis. Treatments for Lupus vs. MS vs. vasculitis vs. other AI diseases are very different. And many of these are life-threatening without proper treatment; lifestyle changes won't cut it. My wife struggled with weird autoimmune symptoms that eventually progressed enough to get a diagnosis. At the time of her diagnosis, her life expectancy without treatment was 1-2 years. I empathize a lot with patients and doctors who are trying to dial-in on a mysterious illness.
  - aksss 6y ago
    Yes, agree on the benefit of a specific diagnosis, but those aren't available to everyone with autoimmune symptoms. As mentioned, there are people who check all the boxes but are short one or two to get a specific diagnosis. In these cases, the psychological toll is pretty heavy - the uncertainty of your future while your very identity is being challenged. I've seen people respond badly - instances where people engage in a tragically comic route of turning to chronic alcohol intake, becoming inactive/sedentary, bandaging emotional pain with bad diet, etc. Precisely activities that are known to aggravate autoimmune disorders. This is a horrible reaction. Now, even with a specific diagnosis, the first thing your rheumatologist is going to tell you is that you need to make lifestyle changes - diet, sleep quality, stress levels, etc. That's going to be solid medical advice regardless of what drugs you go on. For those without a specific diagnosis, adopting these lifestyle changes is still good advice and within reach. There is no instance I've seen where someone with an autoimmune disorder can rely solely on drugs and be otherwise "normal". The drugs (especially those beyond hydroxychloroquine) have unpleasant side effects of their own that need to be managed. In all cases with drugs, the goal is to get the disease itself into a managed state, and ideally into remission. That's not possible for everyone, but for plenty of people it is possible to manage mild instances of disease without drugs, and enough of a possibility that I think it's at least worth a try. This doesn't mean stopping your drugs and doing reckless experiments, but in consultation with a rheumatologist weaning off drugs while having adopted lifestyle changes that avoid known triggers for flare ups. If it doesn't work, go back on the drugs.
    - treeman79 6y ago

aksss 6y ago

I’ve met people with “all the markers but one” and thus never get a neat diagnosis of a known disease, and it’s very devastating to live with that kind of an unknown where doctors have so few answers or cures (not that they have all that much more with known AI diseases, but it’s more comforting to be bucketized than most people know). For lack of better solutions they can get put on daily prednisone for months (or years!) which causes a wholly different set of health challenges to manage the first. It can be very hard for folks walking homeless through a desert of autoimmune knowledge. Often my advice is, “what would you do if you had that last marker? Adopt a lifestyle as if you did: watch your food intake, do gentle but regular exercise, get plenty of sleep, reduce mental and physical stress, avoid excess (sun, drink, food, etc).” I’ve yet to meet anyone with a neat diagnosis that wants to be on immunosuppressive drugs, so even these folks must strive to manage their disease through disciplined lifestyle changes. I also understand the need for doctors to be measured in their diagnosis, so I don’t begrudge them for following protocols established for disease qualification. I don’t think of it as invalidating experiences of patients (though it can feel that way to patients) but everyone is aware of those that want a diagnosed health problem, and to a more frequent extent, those that want a tidy answer to their experiences even if there isn’t one. Denying a diagnosis of a known disease is not denying a diagnosis at all.

treeman79 6y ago
Lost a year due to this. Had to push hard for further testing. Plus just trying the treatment. Had a big positive response. If I hadn’t pushed they would have just had me come in once a year to “check”. One of the factors that got me a diagnosis.
alach11 6y ago
There's a huge benefit to getting a specific diagnosis. Treatments for Lupus vs. MS vs. vasculitis vs. other AI diseases are very different. And many of these are life-threatening without proper treatment; lifestyle changes won't cut it. My wife struggled with weird autoimmune symptoms that eventually progressed enough to get a diagnosis. At the time of her diagnosis, her life expectancy without treatment was 1-2 years. I empathize a lot with patients and doctors who are trying to dial-in on a mysterious illness.
- aksss 6y ago
  Yes, agree on the benefit of a specific diagnosis, but those aren't available to everyone with autoimmune symptoms. As mentioned, there are people who check all the boxes but are short one or two to get a specific diagnosis. In these cases, the psychological toll is pretty heavy - the uncertainty of your future while your very identity is being challenged. I've seen people respond badly - instances where people engage in a tragically comic route of turning to chronic alcohol intake, becoming inactive/sedentary, bandaging emotional pain with bad diet, etc. Precisely activities that are known to aggravate autoimmune disorders. This is a horrible reaction. Now, even with a specific diagnosis, the first thing your rheumatologist is going to tell you is that you need to make lifestyle changes - diet, sleep quality, stress levels, etc. That's going to be solid medical advice regardless of what drugs you go on. For those without a specific diagnosis, adopting these lifestyle changes is still good advice and within reach. There is no instance I've seen where someone with an autoimmune disorder can rely solely on drugs and be otherwise "normal". The drugs (especially those beyond hydroxychloroquine) have unpleasant side effects of their own that need to be managed. In all cases with drugs, the goal is to get the disease itself into a managed state, and ideally into remission. That's not possible for everyone, but for plenty of people it is possible to manage mild instances of disease without drugs, and enough of a possibility that I think it's at least worth a try. This doesn't mean stopping your drugs and doing reckless experiments, but in consultation with a rheumatologist weaning off drugs while having adopted lifestyle changes that avoid known triggers for flare ups. If it doesn't work, go back on the drugs.
  - treeman79 6y ago