1. < MAC & Bronchiectasis

Any body noticing cold body temperature while on Big 3?

Posted by cared @cared, Jun 21 3:37pm

Anybody on the big notice being cold when the house is warm? It seems to be mostly my extremities. I’ve been on the azythrmycin-rafabutin and ebuthol for 7 months. My second time as MAC returned after 6 years. This time the treatment is much motor difficult. Of course I’m now 81.

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rmoore901 | @rmoore901 | Jun 22 9:28am

I would report this to your dr as since it’s impacting your extremities it could be a blood flow issue. With all the side effects it’s so hard to know if things going on are related or not. Neuropathy is rare but possible along with a host of other complications. That being said I don’t regulate my temperature well. Lately I don’t seem to be able to tolerate the heat even when it’s not even blazing hot. I do always like to have a blanket for cold feet even on warm days so have my fuzzy winter blanket and my summer muslin blanket with me on the couch at all times! Hope you get some answers to be able to figure this out.

REPLY
1 reply
ccdb | @ccdb | Jun 22 1:18pm

It's possible you have Raynaud's, which mainly affects hands and feet. I've had Raynaud's for years, long before my NTM and Bronchiectasis diagnosis. I would report your symptoms to your doctor to be sure. There are two types of Raynaud's: Primary Raynaud's phenomenon has no known cause. It is the more common form of the condition; Secondary Raynaud's phenomenon is associated with another underlying medical issue, such as RA, lupus, or scleroderma. Factors such as exposure to cold temperatures or certain chemicals may also be linked to this form. The secondary form is less common but typically more serious than the primary form due to damage that occurs to the blood vessels.

I have Secondary Raynaud's, likely stemming from my RA and Scleroderma. A simple blood test can determine if Raynaud's is your problem and what type you have.

I have found that the older I get, the more Raynaud's bothers me, even in the summer. I can drink a glass of cold water or iced tea, and my hands will turn white and then blue, almost black. I've learned how to control a lot of the triggers that set the Raynaud's into action. I take a light jacket into the grocery store, even in the summer; I drink almost NO cold liquids, and wear long sleeves or a sweatshirt in the summer so my husband does not swelter with our air conditioning settings at a higher temperature.

Your condition could be related to the medication or, possibly, Raynaud's. It might be wise to speak to your medical team for their advice.

Good luck.

REPLY
1 reply
sheila7a | @sheila7a | Jun 22 1:49pm

I have had this for long time.
Hypothyroidism.
Can't get use to heat or cold.
I have a jacket with me all the time in the summer.
I asked my ID doctor is it possible to feel hot and cold at same time.
He said probably due to thyroid.
I get a call next day after blood draw.
Thyroid medicine from 50 to 75.
Then they will test again next appointment.

REPLY
cared | @cared | Jun 22 3:34pm

Thank you very much. I will check my thyroid. I was thinking it had something to do with the 3 antibiotics.

REPLY
cared | @cared | Jun 22 3:37pm
In reply to @ccdb "It's possible you have Raynaud's, which mainly affects hands and feet. I've had Raynaud's for years,..." + (show)
@ccdb

It's possible you have Raynaud's, which mainly affects hands and feet. I've had Raynaud's for years, long before my NTM and Bronchiectasis diagnosis. I would report your symptoms to your doctor to be sure. There are two types of Raynaud's: Primary Raynaud's phenomenon has no known cause. It is the more common form of the condition; Secondary Raynaud's phenomenon is associated with another underlying medical issue, such as RA, lupus, or scleroderma. Factors such as exposure to cold temperatures or certain chemicals may also be linked to this form. The secondary form is less common but typically more serious than the primary form due to damage that occurs to the blood vessels.

I have Secondary Raynaud's, likely stemming from my RA and Scleroderma. A simple blood test can determine if Raynaud's is your problem and what type you have.

I have found that the older I get, the more Raynaud's bothers me, even in the summer. I can drink a glass of cold water or iced tea, and my hands will turn white and then blue, almost black. I've learned how to control a lot of the triggers that set the Raynaud's into action. I take a light jacket into the grocery store, even in the summer; I drink almost NO cold liquids, and wear long sleeves or a sweatshirt in the summer so my husband does not swelter with our air conditioning settings at a higher temperature.

Your condition could be related to the medication or, possibly, Raynaud's. It might be wise to speak to your medical team for their advice.

Good luck.

Jump to this post

Very interesting. Thank you. I think it is time for me to speak with my doctor.

REPLY
cared | @cared | Jun 22 3:40pm
In reply to @rmoore901 "I would report this to your dr as since it’s impacting your extremities it could be..." + (show)
@rmoore901

I would report this to your dr as since it’s impacting your extremities it could be a blood flow issue. With all the side effects it’s so hard to know if things going on are related or not. Neuropathy is rare but possible along with a host of other complications. That being said I don’t regulate my temperature well. Lately I don’t seem to be able to tolerate the heat even when it’s not even blazing hot. I do always like to have a blanket for cold feet even on warm days so have my fuzzy winter blanket and my summer muslin blanket with me on the couch at all times! Hope you get some answers to be able to figure this out.

Jump to this post

The description of your life sound very similar to mine. I have neuropathy but never associated it with the coldness. Thank you.

REPLY
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