Anemia

[ghostofachance13]

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

[elephant]

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.

[ghostofachance13]

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

[Alysia]

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 ?

[Rose]

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

[ghostofachance13]

Thanks Rose

[ghostofachance13]

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.

[annekat]

Last summer I was anemic and blood was found in my fecal sample, indicating an internal bleeding. It turned I had esophageal bleeding ulcers, perhaps from years of prednisone, though the doctor wouldn't commit to that as the cause. I also have a hiatal hernia causing acid reflux. I was back to normal with 2 or3 months of ferrous gluconate pills and omeprazole. This year I am anemic again, with no fecal blood found so far. I'm trying to eat more leafy greens and other iron rich foods. I will know more next week with a blood test. I have heard other Weggies say that the disease itself makes them anemic, or maybe the meds. I wonder how much the average doc would really know about that.

Sent from my MotoE2(4G-LTE) using Tapatalk

[ghostofachance13]

Hi Anne,

Hope you find out the cause of your anemia this time around & hope it's not serious!
Take care,
Jacqueline

[annekat]

Thanks, Jacqueline! I'm hoping the iron pills and better diet this time will have made a difference... will find out next week.