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Thread: Anemia

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    Default Anemia

    Hi,

    My Hgb has been slowly dropping over the last month & a half. Other CBC counts are abnormal too & from googling it seems my red cells are being destroyed faster than I can make them. I discovered that this is a symptom of vasculitis but when I asked my rheumy she said the vasculitis has to be severe for that to happen & she doesn't think that's the case with me. Meanwhile I'm on Imuran, Prednisone & just received Rituximab infusions. I've had surgery twice this year for my subglottis stenosis, I'm exhausted, have lost 25 lbs, have numbness in my hands & feet, splinter hemorrhages etc. I'm wondering how common it is to get anemia with Wegener's. Does anyone else have this problem??

    Jacqueline

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    Hope they find out why your HGB is dropping. Is this your first rituximab? The only time I became anemic is when my kidneys were failing.

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    Hi elephant,

    Yes this was my first Rituximab. My kidneys are fine so far. Maybe that's what my rheumatologist meant when she said severe - that it's severe if the kidneys are involved.
    Thanks for your reply

    Jacqueline

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    Hi Jacqueline,

    When I flare, my hemoglobin is dropping down. Even to around the 9. Last flare I also had Splinter hemorrhages. My lungs dr sent me to do heart echo and blood cultures to rule out endocarditis. I didnt have it. Once you rulled it out, then splinter hemorrhage is an indication for active vasculitis. It means that your wg IS flaring.
    Since you just got rtx, it should start working in about 6 weeks or so after (each one is a bit different in the timimg of rtx impact). Big fatigue and loss of weight are also symptoms of wg flare. I am not sure about the numbness.

    How much pred are you on ? Does your dr think that you are flaring ? What other blood results are abnormal ? How low is your hemoglobin ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Hi Jacqueline

    My HB was 9 on diagnosis when my kidneys were failing. My kidney function and HB improved with treatment and my HB has stayed in the low normal range for the past 9 years. There are many reasons for HB to drop and not all are due to Wegeners or the drugs used in the treatment. I think it is certainly something that your doctor will monitor closely and if your HB continues to drop probably order investigations to find out why. As Jack (I think it was him ) once said that just because we have Wegeners does not mean that we cant get another disease...or words to that effect.

    Hope you get some answers soon

    Rose

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    Hi Alysia,

    Yes my doc thinks I'm flaring. I'm on 10 mg Prednisone, 200 mg Imuran. My RDW is high, lymphocytes are low which is to be expected from the Rituximab, Hematocrit & RBCs are low, MCV & MCH are high. My Hgb is 10, was 12 at the end of July.

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    Thanks Rose

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    I often have low hemoglobin and my rheumatologist doesn't seem that concerned. He has referred to it as the anemia of chronic disease. But i don't think it's gone as low as yours. I don't have answers but it sounds as though furhter investogation is definitely a good idea; maybe if the tests Alysia suggested don't reveal anything, you coud see a haematolgoist. Hope you feel better.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Thanks Lisa,

    I'm seeing Dr Christian Pagnoux at the vasculitis clinic at Mt Sinai next week for a second opinion. Maybe he'll have some idea of what's going on.

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    That's great. Amazing clinic. Let us know what he thinks. Good luck!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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