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Do you get regular blood tests to monitor your MG antibody levels?
Some studies have suggested that regular monitoring of antibody levels can be a helpful indicator of improvement: (https://forumsstg.myastheniagravisnews.com/news/antibodies-blood-tests-mg-may-help-monitor-long-term-clinical-status/) & (https://forumsstg.myastheniagravisnews.com/news/anti-musk-antibody-levels-mg-severity-treatment-response-biomarker/).
However, it is still common for neurologists not to have patients regularly monitor antibodies, even when they are on treatments. Doctors often focus on symptoms and muscle strength improvement rather than just monitoring antibody levels. Once a patient is on treatment, the levels of antibodies can decrease, but this does not always correlate directly with clinical improvement. Regular blood tests can additionally be a cost concern and, in the eyes of one’s provider, might not yield sufficient benefits to justify the expense, especially if symptoms and muscle strength are either improving or stable. The same may be true if the patient has a heightened anxiety around blood tests or health appointments.
Do you get regular blood tests to monitor your MG antibody levels?
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9 Replies
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I don’t understand why antibody testing isn’t done say every 3 months. Wouldn’t your antibody level correspond with our disease progress.
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I’ve only had to get a new test when I get a new doctor, after showing them my previous test results. I guess they want to see if anything changed
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I have had no antibody test since I was diagnosed 10/19.
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It’s a waste of money to test antibodies it has nothing to do with disease severity and once you have the antibodies they don’t go away. You have to get plasmapheresis and ivig regularly because the antibodies cleaned out are then replaced with new ones . Can’t escape MG, it’s lifelong unless they can figure out a new treatment that reprograms your immune system to not make them . Understand your treatments, it helps to know why you take immunosuppressants or other to discuss with your doctor.
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No. I asked my new neurologist’s office WHY he did not repeat blood testing following my treatment with Ultomiris. I was curious if testing would show improvement. I was told it’s not done. He had my initial blood work and that was all he needs.
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I personally haven’t had regular blood tests to monitor my MG antibody levels. From what I’ve heard, some doctors don’t focus too much on the antibody levels once treatment is started and instead keep an eye on the symptoms and muscle strength. I understand how it might be expensive or unnecessary if things are improving. But I think it really depends on the doctor’s approach and how you’re feeling.
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No, I tested positive and I was diagnosed within an hour after taking my first mestinon tablet. It’s not that easy for seronegative people. No further Achr testing after 2 1/2 years.
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No I have had no repeat tests. It has never been mentioned.
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I’ve had two aChR binding tests done. First was in high range and the second one done 3 months later it was barely in low range. Waiting to hear from neurologist. These tests were done before I started taking Mestinon so I wonder why the tests results are so different.
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