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Autoimmune bone marrow failure vs MDS

Home forums Patient Message Board Autoimmune bone marrow failure vs MDS

This topic contains 6 replies, has 3 voices, and was last updated by  Janice Sheppard 3 months, 3 weeks ago.

Viewing 7 posts - 1 through 7 (of 7 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

    #44973

    Janice Sheppard
    Participant

    i had an autoimmune workup that was completely negative. i have, however, developed a case of eczema and just read that it can be a complication of severe neutropenia. my last neutrophil count was 0.43. why don’t doctors know this, or at least say so? the immunologist just shrugged and didn’t explain it but said it’s an immunity issue. the dermatologist said nothing about it, but knows my history. i don’t know if they are sparing me from information that they think will worry me, or just don’t know wtf is happening, but i want my doctor to be open and frank with me period. i’m an RN and i research like a fiend when something presents itself. i’m seeing Dr. Steensma at Dana Barber in Boston on Friday and will have more blood work done. i hope he will get on the same page with me. i hate worrying about this all the time, it’s like it’s the corner stone of everything i do.

    #44974

    Janice Sheppard
    Participant

    David, thanks for your reply, i don’t remember seeing it before. i’m going to mention this to dr. steensma when i see him on friday. i saw an immunologist and she did an autoimmune work up which was negative and she seems pretty much done with me. the hematologist had me matched for a bone marrow transplant – if and when i ever need one – so in his opinion i need a hematologist.

    #45003

    Janice Sheppard
    Participant

    My appointment was yesterday. The doctor does feel that this is an autoimmune problem, possibly chronic aplastic anemia. not congenital though, i have been tested up the wazoo for genetic reasons, all negative. he thinks maybe a virus did it. he did not suggest taking a steroid at this point. interestingly, in the last month i was started on clobetasol shampoo and hydrocortisone for my face and scalp after what is thought to be an allergic reaction (i don’t think it is allergic, i think it is autoimmune, but i have to go through the process). anyway, my neutrophil count was 3 x higher than it was on december 11 (0.43 to 1.2 – higher than in the last at least 2 years. i asked if it was possible the topical steroids were responsible for that. the feeling was that there isn’t enough absorbed topically to make an impact, but they couldn’t say for sure. maybe a coincidence. honestly, i think it did make a difference and is the reason for the improvement. thanks for your input david.

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