4 ms·

A word of caution for everyone talking about RA here. RA is just a simple name we give to a number of conditions that share similar symptoms but we dont really

A word of caution for everyone talking about RA here. RA is just a simple name we give to a number of conditions that share similar symptoms but we dont really know if they are all related and if they share the same root causes or not. Its not a very specific disease that you can diagnose, so what may have worked for you does not carry much bearing on what would work on someone else with a condition labeled as RA

zeagle 4y ago
Seropositive RA is a specific but variable condition. Seronegative RA... you are quite right. It's almost easier to group by a rational treatment approach for a chronic inflammatory polyarthritis that looks like RA clinically rather than one diagnostic entity. Here is kind of a fun prospective study that illustrates your point well: https://pubmed.ncbi.nlm.nih.gov/29998832/ https://pubmed.ncbi.nlm.nih.gov/29998832/ . The investors assessed what patients in their centre were reclassified into 10 years after a diagnosis of seronegative RA. "13 (13/435 [3%]) could be reclassified as seropositive or erosive RA: 4 turned seropositive (2 for ACPA and 2 for RF [> 2x reference level]) and 9 developed erosions typical for RA. " ... "Reclassification revealed 68 (16%) cases of polymyalgia rheumatica, 46 (11%) psoriatic arthritis, 45 (10%) osteoarthritis, 38 (8.7%) spondyloarthritis, 15 (3.4%) plausible reactive arthritis, 10 (2.3%) gout, 17 (3.9%) pseudogout, 6 (1.4%) paraneoplastic arthritis, 6 (1.4%) juvenile arthritis, 2 (0.5%) haemochromatosis, 3 (0.7%) ankylosing spondylitis, 2 (0.5%) giant cell arteritis, and 8 miscellaneous diagnoses. The other 140 patients (32%) could not be reclassified in any clear-cut diagnosis " Caveat: A big limitation is we don't know how many patients were diagnosed with seropositive RA in that time frame: I'd wager it's over an order of magnitude higher. These were probably less clear cut cases.
kodah 4y ago
I was diagnosed with RA a few years ago when my left knee kept swelling to the size of a grapefruit. It was incredibly painful; I have a very high pain tolerance and it put me in tears and made me bed ridden or on crutches for multiple days at a time. Doctors were unable to find anything in the fluid of my knee and the only thing that seemed to work was corticosteroids. Prior to that I was given the diagnosis of pseudo-gout. I took methotrexate in my twenties and thirties for years, my hair fell out, and I couldn't drink. When I moved I went to reup my prescription at a Rheumatologist who ran a research clinic and as she went over my paperwork she looked in shock as she read through it and asked me, "Have you actually ever had site testing for RA or did they just look for markers?" Turns out, all they'd ever looked for was markers, tried methotrexate, and my symptoms stopped. Doctors at Baylor Scott & White thought that was good enough. At the time, I was told repeatedly that we know "a lot" about RA and that I could trust the diagnosis. I was slowly weened off of methotrexate and we waited to see if I would have a flare-up. The flare-up never came and she told me not to come back after telling me more or less what you've said here. I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life.
- belinder 4y ago
  > I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life This seems so frustrating to me. A big factor in the high healthcare prices in the US is that doctors need to pay heavy premiums for their malpractice insurance. If they can't get sued anyway then why are we all paying them to pay for the insurance?
  - Wowfunhappy 4y ago
    Obviously, because they can get sued, just not for a misdiagnosis in most cases. A surgeon who removed the wrong organ, for example, is liable to get sued.
- peanutz454 4y ago
  I am sorry if this is insensitive, but thank God it is difficult to sue a doctor for misdiagnosis. If it were easy, there would be hardly any doctors in the world. Also, maybe I come from a different position but I get a second consult for just about any non-minor ailment I have ever had. Instead of suing doctors, "get second opinion" should be the thing! Every doctor tries their best, its years of toil and labor, and they can make mistakes. Please do not leave such important decision in the hand of one person under the assumption that they are an expert. I understand if you do not have money or time, but the consequence of a misdiagnosis are going to hurt you.
  - bobbylarrybobby 4y ago
    At the very least, if you get a second opinion that's different from the first, and it turns out to be the correct one, you should be able to get your money back from the first doctor.
    - peanutz454 4y ago
      I am not claiming to be all aware on the big picture, but based on my personal experience till now as an Australian, an even better solution is free Medicare.
verulito 4y ago
I have chronic tendonitis in my elbows and hands. They say it's non-rheumatologic but don't know what it is. How frustrating medicine can be. There is no specialty in medicine for treating undiagnosed diseases. You just bounce around between doctors until you give up.
- redmen 4y ago
  [dead]

zeagle 4y ago

Seropositive RA is a specific but variable condition. Seronegative RA... you are quite right. It's almost easier to group by a rational treatment approach for a chronic inflammatory polyarthritis that looks like RA clinically rather than one diagnostic entity. Here is kind of a fun prospective study that illustrates your point well: https://pubmed.ncbi.nlm.nih.gov/29998832/ https://pubmed.ncbi.nlm.nih.gov/29998832/ . The investors assessed what patients in their centre were reclassified into 10 years after a diagnosis of seronegative RA. "13 (13/435 [3%]) could be reclassified as seropositive or erosive RA: 4 turned seropositive (2 for ACPA and 2 for RF [> 2x reference level]) and 9 developed erosions typical for RA. " ... "Reclassification revealed 68 (16%) cases of polymyalgia rheumatica, 46 (11%) psoriatic arthritis, 45 (10%) osteoarthritis, 38 (8.7%) spondyloarthritis, 15 (3.4%) plausible reactive arthritis, 10 (2.3%) gout, 17 (3.9%) pseudogout, 6 (1.4%) paraneoplastic arthritis, 6 (1.4%) juvenile arthritis, 2 (0.5%) haemochromatosis, 3 (0.7%) ankylosing spondylitis, 2 (0.5%) giant cell arteritis, and 8 miscellaneous diagnoses. The other 140 patients (32%) could not be reclassified in any clear-cut diagnosis " Caveat: A big limitation is we don't know how many patients were diagnosed with seropositive RA in that time frame: I'd wager it's over an order of magnitude higher. These were probably less clear cut cases.

kodah 4y ago

I was diagnosed with RA a few years ago when my left knee kept swelling to the size of a grapefruit. It was incredibly painful; I have a very high pain tolerance and it put me in tears and made me bed ridden or on crutches for multiple days at a time. Doctors were unable to find anything in the fluid of my knee and the only thing that seemed to work was corticosteroids. Prior to that I was given the diagnosis of pseudo-gout. I took methotrexate in my twenties and thirties for years, my hair fell out, and I couldn't drink. When I moved I went to reup my prescription at a Rheumatologist who ran a research clinic and as she went over my paperwork she looked in shock as she read through it and asked me, "Have you actually ever had site testing for RA or did they just look for markers?" Turns out, all they'd ever looked for was markers, tried methotrexate, and my symptoms stopped. Doctors at Baylor Scott & White thought that was good enough. At the time, I was told repeatedly that we know "a lot" about RA and that I could trust the diagnosis. I was slowly weened off of methotrexate and we waited to see if I would have a flare-up. The flare-up never came and she told me not to come back after telling me more or less what you've said here. I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life.

belinder 4y ago
> I also learned it's incredibly difficult to sue a doctor for a misdiagnosis, even if they put you on a drug like methotrexate and took years of normalcy from your life This seems so frustrating to me. A big factor in the high healthcare prices in the US is that doctors need to pay heavy premiums for their malpractice insurance. If they can't get sued anyway then why are we all paying them to pay for the insurance?
- Wowfunhappy 4y ago
  Obviously, because they can get sued, just not for a misdiagnosis in most cases. A surgeon who removed the wrong organ, for example, is liable to get sued.
peanutz454 4y ago
I am sorry if this is insensitive, but thank God it is difficult to sue a doctor for misdiagnosis. If it were easy, there would be hardly any doctors in the world. Also, maybe I come from a different position but I get a second consult for just about any non-minor ailment I have ever had. Instead of suing doctors, "get second opinion" should be the thing! Every doctor tries their best, its years of toil and labor, and they can make mistakes. Please do not leave such important decision in the hand of one person under the assumption that they are an expert. I understand if you do not have money or time, but the consequence of a misdiagnosis are going to hurt you.
- bobbylarrybobby 4y ago
  At the very least, if you get a second opinion that's different from the first, and it turns out to be the correct one, you should be able to get your money back from the first doctor.
  - peanutz454 4y ago
    I am not claiming to be all aware on the big picture, but based on my personal experience till now as an Australian, an even better solution is free Medicare.

verulito 4y ago

I have chronic tendonitis in my elbows and hands. They say it's non-rheumatologic but don't know what it is. How frustrating medicine can be. There is no specialty in medicine for treating undiagnosed diseases. You just bounce around between doctors until you give up.

redmen 4y ago
[dead]