Below is a reply from an expert in the field of immunology to my email asking why there are not better tests for autoimmune disease. In particular I wanted t know why cytokine profiling is done by researchers but not by doctors for their patients. (Cytokines are immune system chemical messengers that regulate our immune system. When there is too much of one or too little of another, we have autoimmune disease. I have put in boldface the key to why we cannot get better testing to determine if we have autoimmune and if it is progressing. The research community does not consider it reliable and repeatable. Of course skin prick allergy testing is
accepted yet it is only at best 60% accurate.
Dear Mr. Welch
Thanks for your note, as a father too, I can only imagine your frustration. We do measure cytokine expression, but it is not clinically robust enough to use. The key, I hope, will be in the genetics and correlating those measurement with cytokine and other immune measurements. Good luck, and rest assured that while it is slow, we are making progress.
"Famous Researcher," MD (name withheld)
Below is my original email to Dr. "Famous Researcher" to which he replied above. I have added boldface to the most important points. The bold face was not present in the original.
Dear Dr. Hafler
I just read and online abstract of your recent article in Nature Immunology. I have a question, if "alterations in cytokine expression have long been observed in individuals with immune-mediated disease," why aren't there clinical tests for cytokine expression?
My son has both psoriatic arthritis and a hypersensitivity/anaphylaxis disorder. I have a hypersensitivity disorder as well. Yet there are no tests to rule in or rule out what we have. My son's PsA was not diagnosed correctly until he started having psoriasis outbreaks. The arthritis preceded the psoriasis by months. First it was a knee sprain, then inflammatory arthritis, then rheumatoid arthritis finally when the psoriasis showed up he got a correct diagnosis--PsA. Shouldn't there be a cytokine profile test for each autoimmune disease and its variants? Why isn't there one?
Not to mention the hypersensitivity disorder which leaves us with syncope, urticaria, angioedema and sudden onset apnea. Why is there no cytokine test to identify who has hypersensitivity tendencies and who doesn't? The "allergy" skin tests are only about 60% correct giving many false positives and even false negatives. I had a false negative for penicillin that almost killed me later when I took penicillin confident I would not react. Where are the cytokine or similar profiles that would indicate that my son and I are missing some kind of "off button" that prevents hypersensitivity reactions?
Another problem is the clinical trial situation. My son and I never qualify for any clinical trials because we have had hypersensitivity reactions to so many medications and foods (exclusion criteria). Even if we did qualify half the patients are given placebos. So our chances are only fifty/fifty we would get help. During the testing my son would have to stop taking the two meds (Enbrel and Plaquenil) that he has not reacted to yet. So if he is on a placebo arm his PsA gets worse and worse.
Clinical trials as run today are unnecessarily cruel and drawn out. Many revolutionary treatments (like Rituxan) take ten years or more to get to patients. A lot of suffering and dying goes on in those ten years. If we could measure cytokine changes, there would be no need for placebo-patients. Researchers could gage whether the IND was valuable by looking to see if the cytokine profile was beginning to normalize. If it did great, the IND works. If the cytokine profile does not normalize than the IND is not doing its job--back to the lab bench.
Is anyone doing anything about getting better testing like cytokine profiles for immune related disorders?
I know you are busy. I appreciate your good work. If you do not have time to answer I understand. Sometimes I just get so frustrated. Four years ago my son was a healthy college senior with girlfriends, a college lab job, his own apartment and a goal to be a doctor. Now all that is gone, he has only a chair in front of the TV and his bed. He no longer can walk unaided nor get his own food or drink. Once he was editor of his college newspaper. Today he cannot use a typewriter or computer mouse.
I am so angry and I am so sad,
Thanks for any hope on the testing front you can give me.
Peter Welch
autoimmunenews.blogspot.com
accepted yet it is only at best 60% accurate.
Dear Mr. Welch
Thanks for your note, as a father too, I can only imagine your frustration. We do measure cytokine expression, but it is not clinically robust enough to use. The key, I hope, will be in the genetics and correlating those measurement with cytokine and other immune measurements. Good luck, and rest assured that while it is slow, we are making progress.
"Famous Researcher," MD (name withheld)
Below is my original email to Dr. "Famous Researcher" to which he replied above. I have added boldface to the most important points. The bold face was not present in the original.
Dear Dr. Hafler
I just read and online abstract of your recent article in Nature Immunology. I have a question, if "alterations in cytokine expression have long been observed in individuals with immune-mediated disease," why aren't there clinical tests for cytokine expression?
My son has both psoriatic arthritis and a hypersensitivity/anaphylaxis disorder. I have a hypersensitivity disorder as well. Yet there are no tests to rule in or rule out what we have. My son's PsA was not diagnosed correctly until he started having psoriasis outbreaks. The arthritis preceded the psoriasis by months. First it was a knee sprain, then inflammatory arthritis, then rheumatoid arthritis finally when the psoriasis showed up he got a correct diagnosis--PsA. Shouldn't there be a cytokine profile test for each autoimmune disease and its variants? Why isn't there one?
Not to mention the hypersensitivity disorder which leaves us with syncope, urticaria, angioedema and sudden onset apnea. Why is there no cytokine test to identify who has hypersensitivity tendencies and who doesn't? The "allergy" skin tests are only about 60% correct giving many false positives and even false negatives. I had a false negative for penicillin that almost killed me later when I took penicillin confident I would not react. Where are the cytokine or similar profiles that would indicate that my son and I are missing some kind of "off button" that prevents hypersensitivity reactions?
Another problem is the clinical trial situation. My son and I never qualify for any clinical trials because we have had hypersensitivity reactions to so many medications and foods (exclusion criteria). Even if we did qualify half the patients are given placebos. So our chances are only fifty/fifty we would get help. During the testing my son would have to stop taking the two meds (Enbrel and Plaquenil) that he has not reacted to yet. So if he is on a placebo arm his PsA gets worse and worse.
Clinical trials as run today are unnecessarily cruel and drawn out. Many revolutionary treatments (like Rituxan) take ten years or more to get to patients. A lot of suffering and dying goes on in those ten years. If we could measure cytokine changes, there would be no need for placebo-patients. Researchers could gage whether the IND was valuable by looking to see if the cytokine profile was beginning to normalize. If it did great, the IND works. If the cytokine profile does not normalize than the IND is not doing its job--back to the lab bench.
Is anyone doing anything about getting better testing like cytokine profiles for immune related disorders?
I know you are busy. I appreciate your good work. If you do not have time to answer I understand. Sometimes I just get so frustrated. Four years ago my son was a healthy college senior with girlfriends, a college lab job, his own apartment and a goal to be a doctor. Now all that is gone, he has only a chair in front of the TV and his bed. He no longer can walk unaided nor get his own food or drink. Once he was editor of his college newspaper. Today he cannot use a typewriter or computer mouse.
I am so angry and I am so sad,
Thanks for any hope on the testing front you can give me.
Peter Welch
autoimmunenews.blogspot.com
No comments:
Post a Comment