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Autoimmune bone marrow failure vs MDS

Home forums Patient Message Board Autoimmune bone marrow failure vs MDS

This topic contains 3 replies, has 3 voices, and was last updated by  Donna 2 weeks, 5 days ago.

Viewing 4 posts - 1 through 4 (of 4 total)
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  • #44733

    Janice Sheppard
    Participant

    This is my most recent CBC result from last week. WBC 2.62, RRBC 3.22, HGB 12.3, HCT 37.7, PLT 144, MCV 117.1, MCH 38.2, MCHC 32.6, RDW 14.8, NEUTS 16.3%, LYMPHS 54.6%, MONOS 19.1%, EOS 8.8%, BASOS 0.8%, IMMATURE GRANS 0.4%, ABS NEUTS 0.43, ABS LYMPHS 1.43, ABS MONOS 0.5, ABS EOS 0.23, ABS IMM GRANS 0.01.

    The changes have been happening quite slowly over time. I’ve had 4 bone marrow biopsies in about 25 years. The first 2 in my 20s were hypocellular but chromosomally normal. In 2009 and 2017 there is trisomy 8 and still hypocellular (20% overall in 2017). There is focal dyserythropoesis. A definitive diagnosis of MDS has not been made because “findings are insufficient to make a myelodysplasia diagnosis based on WHO criteria”. Summary suggests a reactive process of some kind. I have been run through the bone marrow donor bank and feel like I am waiting for the shoe to drop.

    I’m told I am an outlier, based partly on the length of time I have been experiencing these changes. I am told they dont know why this is happening to me. My own research suggests possibly autoimmune response, but my doctor doesn’t seem to want to entertain this. Theres been no discussion about it. I’m still waiting for an answer to an email I sent a week ago.

    Research mentioned successful treatment of idiopathic neutropenia with immunosuppression. If that could work, if I ever need treatment (blood work trends suggests that will be the case), I would prefer it over a bone marrow transplant. I’m 50, my age is not in my favour.

    Any insight into this would be tremendously appreciated. I would be happy to give any more information I can if that would be helpful.

    Thank you.

    #44738

    Janice Sheppard
    Participant

    also, i am in the boston area so a center of excellence is close. the doctor i see is with MGH, but i think the center of excellence is dana farber, which is on the MGH campus. it’s a little confusing, i think it’s part of the same network. anyway, my doctor’s name doesn’t come up on the dana farber search, and the transplant specialist’s name doesn’t either. does it make sense to access a COE when it’s kind of the same hospital? i don’t want to waste anyone’s time.

    #44811

    David Williams
    Participant

    I think your low WBC, low platelets, high MCV, and sky-high monocytes point to congenital dyserythropoietic anemia with autoimmune destruction of WBCs. If I were you, I’d ask my doctor for a 2-week trial of 10mg per day of prednisone to see if the blood parameters will improve. The reason I say this is because it looks like you do have a bit of hyper-immunity going on. If so, low-dose prednisone will tone your immune system which should show a change in your blood parameters. I also think you need an immunologist more than a hemotologists.

    #44815

    Donna
    Participant

    Hi Janice……We spoke on one of the other topics. MGH and Dana Farber both come under Partners Health Care, but they are separate. Dana Farber is associated more with Brigham and Women’s. Anyway, my advice is to keep your appointment with Dr. Steesnma for another opinion…..just my opinion. Donna

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