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]

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.

[ghostofachance13]

Thanks Rose :)

[LisaT]

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.

[ghostofachance13]

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.

[LisaT]

That's great. Amazing clinic. Let us know what he thinks. Good luck!

[little jerry]

I also spent a long time trying to get my platelets up to a safe level. My spleen was the bad guy, and it had to be removed. after that my blood counts returned to normal. I hope you find the prob. soon.

[ghostofachance13]

Thanks Lisa :)

[ghostofachance13]

Thanks Jerry :)

[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.

[whatthewhat]

I literally said what the heck out loud when I read this and I haven't even read the other replies because this is so upsetting to me. Like, seriously. And I never get like this on here. But yes yes yes anemia is a warning sign. When the cells have inflammation blood can leak out, in my stupid laymen's lingo. Out daughter was diagnosed with HGB under 5. Totally common with pediatric-onset. I had assumed with adults too. I mean, I know not that low, levels are different with adults. But still. And no, our daughter wasn't coughing up blood and her kidneys weren't involved either. Neuropathy, weight loss, anemia, stenosis, exhaustion...what the heck would it take for your Rheumy to call it serious?? (Went back and edited my swear words #ILoveAndrewAndDontWantToVexHim

[ghostofachance13]

Hi whatthewhat

Thanks so much for your feedback.
I feel that the anemia must be from the Wegener's but I'm getting a second opinion from a doc at the Vasculitis Clinic in Toronto next week. Hopefully he can shed some light on it. Sorry to hear that your child has Wegener's- that must be tough!