Second time treating and second time losing hair!

I am so sorry that you are going through that. Is it possible that the meds are causing GI issues and so may be keeping you from absorbing nutrients? Also, when you are sick and fighting something, you need more protein. All of our hormones- including thyroid and sex hormones are dependent on adequate protein. It might be worthwhile to have your protein level checked, as well as hormones. Meanwhile, an excellent probiotic along with daily kefir- all on an empty stomach first thing in the morning- may help.

Also you could see whether low dose oral minoxidil might help- probably via a dermatologist

I had the same situation but since I have been using black redish juice (I grate the vegetable and squeeze through a piece of cotton cloth- it smells rotten eggs) I also use coconut oil and products from "Back to Nature "store which I have around) the hair situation has improved. My ID said she had no patients complaining about the issue but unfortunately I lost a lot of hair before I started reacting. I hope you will not feel so alone with the problem now. Good luck and let me know on my personal email how it goes.

At first 5 years ago after starting treatment and my spo2 increased, my gray hair also decreased but thinned. Now 5 years later, I've just lost my arm pit hair.

I lost hair also on Azithromycon and ethambutol. It has started growing back after 2 months off medication.

Both those meds affect zinc and copper. Both those minerals affect hair growth. Maybe doctors can start monitoring patient blood levels of both. Recommendations are 1 mg of copper for every 15 mg of zinc to keep from creating an imbalance. I don’t know if they can be taken together or not, but when I take them, I take the minerals early in the day and the meds at bedtime. Also check good food sources for each.

My thyroid and dhea levels tanked after starting the meds. My PCP told me that fighting chronic illness affects many things. Since all systems are interrelated, it makes sense that hormone levels would be affected. When your body is under stress, the pituitary slows the stimulation of thyroid hormone in order to conserve your resources. It is a protective mechanism. Your adrenal glands also take a hit from chronic illness. I was told that at least Azithromycin affects the mitochondria. I wish the treatment centers had endocrinologists on staff.

Thanks for your responses. I will be speaking with my Drs this week, and I’ll ask about more testing.

Also Ethambutol & Azithromyacin (since March) & Arikayce (took 2 month hiatus bc need voice for work) and had NO idea hair loss was due to these meds! Have no appetite and have increased protein - also have finger nails separating from nail bed on all but 2 fingers and wonder if that’s not related to this combo (MAC recent development past couple years but RA since childhood so have tendency to lump new issues into that pool but quite possible due to Xeljanz, prednisone plus MAC meds) really frustrating
There is another MAC /Arikayce related support group at connect.ntminfo.org that you might find helpful as well

Oh gosh. I never had those side effects from any of those meds. Have you had your thyroid checked? I have Graves disease on top of MAC and Graves gives me those symptoms. Just a suggestion.

Suzy, you are the only other person I ever heard of that had both, like I did. Are you treating it at this time? Mine turned out to be related to another health issue, and resolved over time. But my ophthalmologist keeps an "eagle eye" on my eyes to be sure the effects don't reappear.
Once my thyroid normalized, I got my hair back - but dark brown mixed with gray instead of dishwater blond and no gray.
Sue