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  • Treatment for Macrophage Activation Syndrome not effective so far

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    Old 09-16-2014, 06:36 AM   #1
    Xmhawk
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    Treatment for Macrophage Activation Syndrome not effective so far

    My Mom is diagnosed with Macrophage Activation Syndrome (MAS) and so far, other than some initial progress where her organs such as liver recovered, the treatment she has been given hasn't been fully effective. Does anyone have any experience with this and have any suggestions for treatment that the doctors might not have tried? Also, would a more homeopathic approach that is less toxic be an option?

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    On Aug 11th, my Mom was diagnosed with Macrophage Activation Syndrome (MAS), a very rare autoimmune syndrome that can be escalated from Adult-onset Stills Disease (AOSD). She was in the hospital prior to this with high fever every night and given a lot of antibiotics before ruling out the possibility of any infection. Her liver was deteriorating, chest congested and markers for MAS such as triglycerides, fibrinogen and high ferritin were present. A bone aspiration test confirmed MAS.
    They started treatment by giving her a higher dose of steroids initially, then added ciclosporin and etoposide. Her initial ferritin was 18,000 and it went up to 20,000 the first couple of days before giving etoposide which brought it down to around 2000. Her chest cleared up, liver and kidneys recovered and she was clinically better. Her WBC kept going down to as low as 140 so they held off on another etoposide dose and gave her neupogene shots during that time to boost her WBC. Her body responded well to those and her WBC went up. On August 30 and 31st, they gave her another etoposide but split into two days, and continued with two more etoposide doses on September 4th and 9th. The treatment doesn't seem to be working since her markers (ferritin, fibrinogen, triglycerides, etc) are back up again. The doctor is now suggesting the fifth line of attack, ATG, another immunosuppressant, I believe, which is very risky.

    Thanks for any help.

     
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    Old 09-17-2014, 11:44 PM   #2
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    Re: Treatment for Macrophage Activation Syndrome not effective so far

    This is too serious to even consider homeopathic treatment, which could be totally ineffective and cause all sorts of problems with effects on blood clotting and not mixing well with the drugs she is on. It is a delicate balance to give enough drugs to control the disease without dropping her blood count too low. It isn't that it is not working, but the doses required are causing serious side effects in lowering her blood count. I am not familiar with the ATG. Perhaps the full name would make sense to me instead of the abbreviation. It sounds like she is in good hands, but has a serious disease going on, which may take some time for the Drs to figure out what will control it without causing her problems. She is lucky to have a concerned daughter trying to help her. I do hope she recovers quickly and stabilizes with her treatment.

     
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    Old 09-18-2014, 03:26 AM   #3
    Xmhawk
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    Re: Treatment for Macrophage Activation Syndrome not effective so far

    Thanks so much for your response. ATG stands for Antithymocyte Globulin.
    Her ferretin counts are 8000 today. It was around 4700 a couple of days back. They are giving her another etoposide dose today, making it the 5th dose. We expect WBC counts to reduce with etoposide as a side effect but I would also expect the markers for MAS such as ferritin, fibrinogen and triglycerides to improve. From my understanding, it seems like etoposide doesn't seem to be helping anymore since the ferritin counts keep rising. I would think at the very least, the markers would stay the same. Let me know if I happen to be misunderstanding how the drug works.

    Last edited by Xmhawk; 09-18-2014 at 03:34 AM.

     
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    Old 09-18-2014, 05:59 PM   #4
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    Re: Treatment for Macrophage Activation Syndrome not effective so far

    Unfortunately, your Mom is struggling with a life threatening disease process, and although the drugs may be working somewhat, as 8000 is way better than 18000 on the ferritin, it is still a very delicate balance., The disease itself causes low blood cell counts, so determining if low counts are disease or drug caused is very difficult. This is such a rare and specialized problem, I think you need to trust her Physicians, who seem to be reaching to extraordinary heights to help her, and pray that she responds. I think this is a problem that is way beyond anyone on this board, including me, to help with. Best to you and her.

     
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    Old 09-21-2014, 03:08 AM   #5
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    Re: Treatment for Macrophage Activation Syndrome not effective so far

    Xmhawk, my extremely limited comprehension of what I've read about MAS leads me to the same thoughts Ladybud has. Some highly technical articles seemed to suggest that her doctors have tried the first-line approaches I saw described---steroids and cyclosporine---then next listed was immunoglobulins. Is that what ATG is, an immunoglobulin?

    There was an add'l approach cited, called "anakinra", but I have no clue what it is (sorry).

    Is your mom being treated by university doctors? Another thought: I think there are national organizations for rare immunological diseases, which I think includes conditions more or less at the nexus of autoimmune and immunological. Have you sought out such an org?

    I wish I had more thoughts. Please know we're thinking of you both, and let us know how she's faring. Sincerely, Vee

     
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