Gingergrrl
Senior Member
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@Belgiangirl I apologize that I am not able to read your entire posts right now but wanted to reply to the parts where you tagged me.
I'm not sure what you are referring to and I wish I had a low BMI like you mentioned but am not even close! I do know that I've mentioned in a few threads that my main doctor felt that Imuran was far too dangerous for me (back in 2016) b/c it wipes out the entire immune system. But I definitely did not say that re: Rituximab which is targeted just at B-cells. I credit Rituximab (along with IVIG) for giving me my life back and I definitely NEVER said that it will "kill you straight away" as you you quoted me above. I am hoping you can clarify that and not attribute a statement to me that I did not say. There are cases even where Imuran is the appropriate treatment, it just was not in my own case per my doctor.
The purpose of my treatment was for autoimmunity. The goal is to reduce the pathogenic (symptom-causing) autoantibodies but they definitely did not turn to zero in my case. I think plasmapheresis (which I did not have) might be able to get them to zero?
I have no idea what you mean that in my country they "judge an antibody"? I'm assuming you mean autoantibodies but not sure what you mean by "judge"? I had eleven autoantibodies from multiple labs including Stanford, the former OMI, Quest, Cell Trend, and Mayo Clinic. We were not guessing in my case and my doctors were certain of my treatment path.
I live in the US. I'm also not sure if I understand what you mean re: trying not to spend all your money on people that are already half dying? Do you mean the insurance companies not wanting to pay for someone who was already very ill like I was (or something else)? I wish there was more of a focus on preventative medicine here (if that is what you mean)? I apologize for not understanding.
Also with my low BMI (±15) and immunity problems I am afraid like @Gingergrrl mentioned any heavy treatment - which includes imuran and rituximab - will kill me straight away.
I'm not sure what you are referring to and I wish I had a low BMI like you mentioned but am not even close! I do know that I've mentioned in a few threads that my main doctor felt that Imuran was far too dangerous for me (back in 2016) b/c it wipes out the entire immune system. But I definitely did not say that re: Rituximab which is targeted just at B-cells. I credit Rituximab (along with IVIG) for giving me my life back and I definitely NEVER said that it will "kill you straight away" as you you quoted me above. I am hoping you can clarify that and not attribute a statement to me that I did not say. There are cases even where Imuran is the appropriate treatment, it just was not in my own case per my doctor.
@Gingergrrl as I read it what was the purpose of your treatment? In your country the goal is to make all antibodies back negative again.
The purpose of my treatment was for autoimmunity. The goal is to reduce the pathogenic (symptom-causing) autoantibodies but they definitely did not turn to zero in my case. I think plasmapheresis (which I did not have) might be able to get them to zero?
But as I interpret it like you state it in your country they judge an antibody
I have no idea what you mean that in my country they "judge an antibody"? I'm assuming you mean autoantibodies but not sure what you mean by "judge"? I had eleven autoantibodies from multiple labs including Stanford, the former OMI, Quest, Cell Trend, and Mayo Clinic. We were not guessing in my case and my doctors were certain of my treatment path.
What country do you live in? (I like this preventive approach of trying not spent all your money on people that are already half dying but prevent they get there instead!).
I live in the US. I'm also not sure if I understand what you mean re: trying not to spend all your money on people that are already half dying? Do you mean the insurance companies not wanting to pay for someone who was already very ill like I was (or something else)? I wish there was more of a focus on preventative medicine here (if that is what you mean)? I apologize for not understanding.