Does anyone have low hemoglobin as a side effect of the Big Three?

Posted by brigi @brigi, Jan 8 10:26am

I had MAC but have been clear for the past nine months. I was supposed to be on the Big Three for another three months. My liver numbers were high and my hemoglobin was low so my respirologist took me off the Rifampin. My liver numbers returned to normal. My hemoglobin continued to drop so for the last few days I am off the Azythromycin and Ethambutol as well. I had a blood test yesterday and unfortunately my liver numbers are high again and my hemoglobin has dipped down further. Although my hemoglobin is very low my ferrin and B12 numbers are good. Has anyone else experienced these side effects from the Big Three?

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After try and see and had to be taken from rifabutin- very high liver enzymes. Otherwise , still on azithromycin, ethambutol and clofazimine, blood work is fine. I have it checked every month

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Hope everything continues to go well for you.

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@brigi

Hope everything continues to go well for you.

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I have Bronchiectasis and MAI. My most recent blood work was out of whack in the hemoglobin and hematocrit and a few other areas. This is something totally new for me, I have not ever had such a blood report result.
I don't know why but hope my scheduled call with the pulmonologist at the end of the month has an answer. I feel fine so I am not horribly worried at this point. Things do change sometimes and then change back. So hoping that is the case for me.
I am NOT on antibiotics, my choice as of now.
Barbara

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@blm1007blm1007

I have Bronchiectasis and MAI. My most recent blood work was out of whack in the hemoglobin and hematocrit and a few other areas. This is something totally new for me, I have not ever had such a blood report result.
I don't know why but hope my scheduled call with the pulmonologist at the end of the month has an answer. I feel fine so I am not horribly worried at this point. Things do change sometimes and then change back. So hoping that is the case for me.
I am NOT on antibiotics, my choice as of now.
Barbara

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Barbara , mine has gotten low like that, so I was put on iron . Lots of things can impact your hemoglobin like diet and absorption. Try not to worry . Your doctor should be able to give you informed information about it. Good luck. Irene5

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Yes, good luck. Hope all our hemoglobin issues get resolved.

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Hi all, one of the things to take note of is that the most common cause of anemia among older people is GI bleeding. So if you are due for a colonoscopy, go ahead and get it done! I had a bout of serious anemia several years ago which was when it was discovered that my Crohn's disease, up til then very mild, was causing bleeding so I was started on Humira which has kept my Crohn's under control and cleared up the anemia. I've had milder ups and downs since then so I take daily iron. Also important to know: if your anemia is at a certain point, best practices now are to treat with iron infusions rather than oral iron. Easier on the stomach and faster improvement.

To complicate matters, bronchiectasis itself CAN be related to low iron. I can't claim to understand the mechanics of this -- maybe someone else more knowledgeable here can explain better -- but it has to do with the relationship of iron to oxygen delivery to the blood. This is a very small study but it found that 60%+ of adults with bronchiectasis are anemic:
https://journals.lww.com/ecdt/fulltext/2018/67040/prevalence_and_impact_of_anemia_in_patients_with.20.aspx
So, it's one issue related to our very complex condition!

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@lvnl

Hi all, one of the things to take note of is that the most common cause of anemia among older people is GI bleeding. So if you are due for a colonoscopy, go ahead and get it done! I had a bout of serious anemia several years ago which was when it was discovered that my Crohn's disease, up til then very mild, was causing bleeding so I was started on Humira which has kept my Crohn's under control and cleared up the anemia. I've had milder ups and downs since then so I take daily iron. Also important to know: if your anemia is at a certain point, best practices now are to treat with iron infusions rather than oral iron. Easier on the stomach and faster improvement.

To complicate matters, bronchiectasis itself CAN be related to low iron. I can't claim to understand the mechanics of this -- maybe someone else more knowledgeable here can explain better -- but it has to do with the relationship of iron to oxygen delivery to the blood. This is a very small study but it found that 60%+ of adults with bronchiectasis are anemic:
https://journals.lww.com/ecdt/fulltext/2018/67040/prevalence_and_impact_of_anemia_in_patients_with.20.aspx
So, it's one issue related to our very complex condition!

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My family doctor put me on iron, vitamin B12, and folic acid. My respirologist though implied that maybe I didn't need the iron and B12 if my blood work showed they were normal which they are. He diagnosed me with hemolytic anemia and he said that there is a 1/100 chance it is caused by the Ethambutol. If my hemoglobin count does not improve after being off the antibiotics for several weeks, they will explore further. Meanwhile I have been referred to a hematologist.

As for GI concerns, that is the first question my doctors asked. When was my last colonoscopy? Did I have diarrhea or feel nauseous? Was there any blood in my urine or stool? etc.

I have my fingers crossed that I will improve by being off those powerful antibiotics.

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