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Old 08-26-2014, 08:08 AM #11
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I would think so...but these labs are not something I'm overly knowledgeable about.

Glenn is the person to ask about this. Hopefully he will see this and reply.
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Old 08-26-2014, 01:15 PM #12
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The doctor says that:
it suggests that the disease is still present and that the ivig is not clearing the antibody. a reduction by 0.02 may not be statistically significant, which is why i've referenced actual immune suppression in our most recent meetings.

Hence the original question of should I allow him to add Imuran or Cellcept to my regimen?

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I would think so...but these labs are not something I'm overly knowledgeable about.

Glenn is the person to ask about this. Hopefully he will see this and reply.
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Old 08-26-2014, 08:13 PM #13
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How long has it been since the skin biopsy was done?

Based upon the answer:

Before you submit to the Cellcept or Imuran, why don't you ask for a repeat skin biopsy to see if the nerve fiber density has increased? That would indicate that the IVIG is, in fact working.

This is one of the benefits of the skin biopsy...that it can be repeated many times to gauge improvement (or progression) of disease process.
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Old 08-27-2014, 06:22 AM #14
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Default I agree with en bloc--

--and also with the idea that a drop to 0.07 may indicate that the therapy is working at least a bit, but it is well within the range of statistical noise so it may indicate a small or even no response. (Fortunately the values did not show an increase.)

Beyond checking skin biopsy values, it may be wroth it to add other immune modulators--there are certainly people who are on multiple ones--but this requires a thorough discussion with the doctors to talk about proposed advantageous effects versus deleterious ones. Many immune suppressors will make you more vulnerable to infection, as well as have metabolic effects on bone and muscle, so the good and the bad have to be weighed against your current symptoms and level of debilitation.
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