Low white blood count while on big 3 for MAC

Posted by Tina Sims @tinaesims, Apr 15 11:34am

I just got a call from my doctor’s office that my white blood count is a little low. Wondered if I have been sick. I have not. Has anybody experienced this? I am on the Big 3 currently.

@tinaesims Mine was low intermittently when on the Big3. Was due for a recheck next week but…still sheltered in place and clinic closed to all but the most pressing needs.
Sue

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@tinaesims I also have a low white blood count since being diagnosed with MAC. I have started taking some B12 vitamins. We who have MAC need to maintain good nutrition which is often difficult due to lack of appetite and Big3 side effects. irene5

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Thanks Irene. I currently take Vitamin D because that was low. I insisted that they test my levels. The meds have thrown my Synthroid off too. How much B 12 do you take? Just wondering what is the benefit of taking it? I feel like all I do is take fists full of pills.

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@tinaesims

Thanks Irene. I currently take Vitamin D because that was low. I insisted that they test my levels. The meds have thrown my Synthroid off too. How much B 12 do you take? Just wondering what is the benefit of taking it? I feel like all I do is take fists full of pills.

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@tinaesims Agreed! I take 400mcg. I also take D as mine was low. I wish all these pills were jelly beans. I’d enjoy them way more!! Irene

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So true! Thanks, I got a laugh out of that.

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I had my teleconference with my pulmonologist yesterday. He said that my levels have gone down a little every month. He thinks this is due to the meds. He's going to test again next month and if they are still going down, switch meds. Any experiences?

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I have been on the Big 3 starting 7 months. My last blood work was 2 weeks ago had 8 flags but not enough to change anything. My question is that I have started doing a lot of physical outside work. I seem to be weak and unable to do much. Is this normal???

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@derbeltal

I have been on the Big 3 starting 7 months. My last blood work was 2 weeks ago had 8 flags but not enough to change anything. My question is that I have started doing a lot of physical outside work. I seem to be weak and unable to do much. Is this normal???

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@derbeltal I am very weak and unable to do much as well. irene5

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@derbeltal In my experience, yes! Keep in mind your body has at least three things assaulting it – a well-established infection, an underlying lung condition, and large doses of potent antibiotics that are messing with your system.
After I finished 18 months of the Big-3, it has taken me 4 months to get back to 80% of my former level of energy.
There are some things you can do to help –
Have the doc check your vitamin/mineral levels in your next labs, you may need supplements to counter the effects of the meds.
To help with strength and energy, make sure you are eating really healthy, nutrient dense food. A nutritionist told me that when you are on the antibiotics and fighting infection, your protein requirements increase. I had no appetite, so forced myself to eat a small snack every or two – a piece of cheese or lean meat, a hard-boiled egg, nuts, a protein bar (I could only manage 1/3 at a time) protein-supplemented fruit & vegetable smoothies, yogurt. Even now I have not recovered weight or appetite and stay on much the same routine. Here is some good information from the National Jewish Health MAC conference:

And a bit of advice, from my Mom who lived and worked with severe Rheumatoid Arthritis for years – "Work a little, rest a little." For 3 summers (before diagnosis & during treatment) I would work in my yard for 15-30 minutes, then rest for up to an hour. Some days I probably only managed an hour or two of actual work. I hired out the digging, mulching, hauling to a teen (I trained him as he worked) and did just the easy stuff.
By the way, if you have bronchiectasis you are at high risk of reinfection – mask and gloves imperative when working in yard and garden
You are not alone – hope this helps!
Sue

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@sueinmn

@derbeltal In my experience, yes! Keep in mind your body has at least three things assaulting it – a well-established infection, an underlying lung condition, and large doses of potent antibiotics that are messing with your system.
After I finished 18 months of the Big-3, it has taken me 4 months to get back to 80% of my former level of energy.
There are some things you can do to help –
Have the doc check your vitamin/mineral levels in your next labs, you may need supplements to counter the effects of the meds.
To help with strength and energy, make sure you are eating really healthy, nutrient dense food. A nutritionist told me that when you are on the antibiotics and fighting infection, your protein requirements increase. I had no appetite, so forced myself to eat a small snack every or two – a piece of cheese or lean meat, a hard-boiled egg, nuts, a protein bar (I could only manage 1/3 at a time) protein-supplemented fruit & vegetable smoothies, yogurt. Even now I have not recovered weight or appetite and stay on much the same routine. Here is some good information from the National Jewish Health MAC conference:

And a bit of advice, from my Mom who lived and worked with severe Rheumatoid Arthritis for years – "Work a little, rest a little." For 3 summers (before diagnosis & during treatment) I would work in my yard for 15-30 minutes, then rest for up to an hour. Some days I probably only managed an hour or two of actual work. I hired out the digging, mulching, hauling to a teen (I trained him as he worked) and did just the easy stuff.
By the way, if you have bronchiectasis you are at high risk of reinfection – mask and gloves imperative when working in yard and garden
You are not alone – hope this helps!
Sue

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Thank you so much. This lets me know that this is normal. I lost 30 lbs and have only gained 12 lbs back. I will start the extra snacks. Already taking extra vitamins. Again thanks you so much for your feedback. I will just have to be patient.

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@irene5

@derbeltal I am very weak and unable to do much as well. irene5

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Thanks. I appreciate the feedback. I was beginning to thank something was going wrong. I am learning life is not as usual. Thanks again.

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@sueinmn

@derbeltal In my experience, yes! Keep in mind your body has at least three things assaulting it – a well-established infection, an underlying lung condition, and large doses of potent antibiotics that are messing with your system.
After I finished 18 months of the Big-3, it has taken me 4 months to get back to 80% of my former level of energy.
There are some things you can do to help –
Have the doc check your vitamin/mineral levels in your next labs, you may need supplements to counter the effects of the meds.
To help with strength and energy, make sure you are eating really healthy, nutrient dense food. A nutritionist told me that when you are on the antibiotics and fighting infection, your protein requirements increase. I had no appetite, so forced myself to eat a small snack every or two – a piece of cheese or lean meat, a hard-boiled egg, nuts, a protein bar (I could only manage 1/3 at a time) protein-supplemented fruit & vegetable smoothies, yogurt. Even now I have not recovered weight or appetite and stay on much the same routine. Here is some good information from the National Jewish Health MAC conference:

And a bit of advice, from my Mom who lived and worked with severe Rheumatoid Arthritis for years – "Work a little, rest a little." For 3 summers (before diagnosis & during treatment) I would work in my yard for 15-30 minutes, then rest for up to an hour. Some days I probably only managed an hour or two of actual work. I hired out the digging, mulching, hauling to a teen (I trained him as he worked) and did just the easy stuff.
By the way, if you have bronchiectasis you are at high risk of reinfection – mask and gloves imperative when working in yard and garden
You are not alone – hope this helps!
Sue

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That was a very informative and helpful video Sue. Thank you.

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