Crohn's Disease Forum » General IBD Discussion » 7 Venofers & Hemoglobin Still 8.3


08-29-2016, 01:00 PM   #1
darubo
 
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Location: Lufkin, Texas

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7 Venofers & Hemoglobin Still 8.3

Hello,
I've had 7 Venofer infusions since 7/1/16 & my hemoglobin isn't going up. Hematologist wants to do bone marrow biopsy; I don't know what to do?

Bone marrow biopsy scares me to death.

Any suggestions or advice are welcomed.

Dana B
Lufkin, TX
08-29-2016, 02:30 PM   #2
shamrock15
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Well there are two possibilities here - either you are losing it at a great rate or you aren't making any new hemoglobin and you have at least small losses regularly. As a minimum you need to find out if and how much hemoglobin your body is losing or destroying. Both are possible. That much is necessary otherwise they can just continually pump iron and blood into you and it won't make a difference (think pumping gas into your car, waiting it to fill up while it is all leaking out onto the pavement). When that is done, and assuming it is rectified, I would think that would be the time for the biopsy. It may be necessary at some point, but for now I would think stopping the losses should take priority.
08-29-2016, 06:43 PM   #3
Malice67
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How low was your hemoglobin to start with? I went from 4.6 to 9.7 after six Venofer infusions, so I would expect that you should be higher by now. Did your number increase at all or has it stayed steady even with the iron? While increases in iron levels generally do increase the hemoglobin there isn't a direct correlation. The Venofer infusions should increase your ferratin levels, which is a different measurement than the hemoglobin itself. I have had one high and the other low on several occasions. I assume they have checked B-12 and folate levels as well, because that is another rason your hemoglobin can be low even when your ferratin is normal. (ie, you could be increasing the ferratin but without the B-12 and folate it doesn't actually get incorporated correctly into the blood.) And as shamrock15 pointed out, you also have to see if you are losing blood at a rate that negates the increased iron. Have you had stool tests or any other tests to see where / if you are bleeding?

good luck
__________________
Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
Current medication:
daily: Pentasa (500mg, 4x/day), probiotics, calcium, vit D, sublingual B12

as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
08-31-2016, 08:19 PM   #4
lisadc1
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Nothing new to offer other than what the above posters stated. Just sending well wishes. Also, I live in KY now, but my family lived in Pineland for 16 years..a small world! Keep us posted on how you are.
09-02-2016, 11:35 AM   #5
darubo
 
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Location: Lufkin, Texas

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When I got the first Venofer infusion my hemoglobin was 8.2; it went up to 9.1 after 5th infusion & then next infusion it had gone back down to 8.3.

I've never had a blood transfusion; I did suggest to dr maybe we should do one, & she said no, she only does blood transfusions if patient is having trouble breathing & other difficulties.

I just had a stool test done last week while in hospital for knee surgery (had an abscess on knee that was replaced 2 years ago) & the stool test was positive for blood.

I just had a colonoscopy & EGD July 5 & everything was normal.

I know dr has tested ferretin levels & all, but can't remember what the values were.

I'm currently doing vancomycin & zosin iv infusions at home thru PICC line for infection in knee; thankfully infection didn't get into the hardware.

Thanks for the responses & I appreciate any & all advice, comments, suggestions.

Dana B.
Lufkin TX
09-02-2016, 12:26 PM   #6
Scipio
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When my hemoglobin dropped to 6.7 due to Crohn's they did an emergency transfusion. It took three units to get it back up to the normal range of 13-15. At the time my doc said they considered anything below 10 to be severely anemic, and they do emergency transfusions starting at 8.0. Apparently it did not depend on also having breathing troubles. I was still breathing okay at 6.7.
09-02-2016, 03:35 PM   #7
littlemissh
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The transfusion guidelines have changed(in the UK anyway). Now in a lot of units the threshold is 7.0/70 unless very symptomatic or active acute bleeding or ischaemic heart disease. This is because studies suggest giving blood at higher levels actually increases your overall risk if not in those groups.
That is why docs prefer iron -oral or intravenous.
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
09-02-2016, 08:13 PM   #8
aypues
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If you're having Venofers and the hemoglobin is still declining it means you are bleeding too rapidly to for it to rebuild. If iron is good then your bone marrow may not be working. Sounds like a course of Prednisone would be in order to stop bleeding and get it under control....that's what I'm doing now, and transitioning to Remicade and Cellcept.
09-03-2016, 01:02 PM   #9
darubo
 
Join Date: Oct 2012
Location: Lufkin, Texas

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My gastroenterologist wants me to have a ct enterography & depending onenterographye results maybe put me on a biologic. I've been dealing with an abscess & surgery to clean out that abscess in the last month or so & haven't been able to do the ct.
In 2012 when the Baylor doctors were trying to diagnose me, I had a ct enterography & it was normal; every single test I had was normal. The Crohn's diagnosis was made only after swallowing a camera capsule which got stuck but pictures showed a stricture & ulcers in my terminal ileum & I had to have a bowel resection & the surgeon had to retrieve the camera.
I think if I can force myself to drink the contrast for the CT it will probably be normal, just like last time, but gastro is adament about me having it & seeing results before putting me on biologics
I feel very scared that maybe I have cancer of some kind & that's why the 7 venofer infusions haven't increased my hemoglobin.
Hematologist told me in 2012 he didn't want to put me on prednisone because of side effects.

Thanks for your advice; I welcome all.

Dana
09-03-2016, 02:01 PM   #10
Charlotte.
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There are also different iron formulations available. I receive Ferinject when my iron levels are too low; as far as I know there are differences between Ferinject and Venofer. Maybe for some reason your body can't handle Venofer? Have you been given Venofer successfully in the past?
__________________
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
09-04-2016, 11:11 AM   #11
darubo
 
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I had Venofer infusions in 2013 after the bowel resection in late 2012 and those infusions successfully raised my hemoglobin to 11.2, I think; I remember it was at least 11.

Then the hemoglobin went down again into the 8's and the doctor had me do infusions of Injectofer (sp?) and it was successful in raising my hemoglobin up to the 11's.

I remember at that time the doctor who was the head of the hemotology department told me that my body would never be able to effectively absorb iron taken orally so I would always have to have iron infusions for the rest of my life.

He said that there is a constant seepage of blood in my small bowel caused by the Crohn's Disease, and even if I don't see blood in the toilet, which I almost never do, there is still bleeding going on and he thought at that time that's what was causing my anemia, plus, he said the constant state of inflammation of my body caused by the Crohn's Disease contributed to the anemia.

The doctors also did some kind of Prometheus test that came back "consistent with Crohn's Disease".

I did ask the hematologist I'm seeing now (she's my only choice due to insurance restrictions and where I live) if we could try the Injectofer and she told me that she "didn't use it". I asked her if she could order it for me so we might try it and see if it would raise my numbers, and she said no.

I just became eligible for Medicare on September 1, so I'm going to find a different hematologist in East Texas for future care after I see the Baylor hematologist in Houston later this month to see what he thinks is going on with me and the hemoglobin not going up after 7 infusions of Venofer.

It's a 2 1/2 hour drive to Houston or I would go down there to Baylor for the iron infusions; I think they're more up on the latest treatments and information, etc., and I trust them more.

I'm willing to do the Prednisone if the doctor recommends it; I'm willing to have a blood transfusion, or whatever will help my hemoglobin go up to a more healthy number. I do feel very, very tired all the time...

Thank you again to everyone who has commented and offered advice or suggestions; I do appreciate it and welcome your help.

Dana B.
Lufkin, TX
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