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Struggling with news of ntm

MAC & Bronchiectasis | Last Active: Mar 13 11:01am | Replies (11)

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Profile picture for kathyjjb @kathyjjb

A few things to note: If there is any way he can wean off the Advair, that is what NJH suggested for me. Inhalants with steroids can cause NTMs since they interfere with lung immunity. Also, if he can get to NJH-highly recommend, especially for the multiple infections! I was diagnosed with Azithromycin resistant M.Abscessus and my local ID doctor started me on 3 harsh antibiotics. Three weeks later, I was at NJH for scheduled appointments. Here is what they told me:
1. Talk to Dr (that understands NTM infections) and hopefully wean off the steroid inhalant and maybe start on Anoro. My Insurance would not cover Anoro, so my local pulm put me on Airsupra with shorter acting steroids.
2. ID doctor at NJH told me my count was only 32 (over 400 is considered high) and I could go off the anti-biotics and do watchful wait. There are people that have been on watchful wait for many years. I know of 2 that have had low counts for over 15 years.
3. I was nebulizing twice per day with 7% saline but my local ID doctor told me I could go to 3% saline and the NJH ID doctor suggested I go to 7% saline 2/day. I hope your BF is nebulizing.
I sure hope this helps. Your BF is very lucky to have you. Keep us posted.

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Replies to "A few things to note: If there is any way he can wean off the Advair,..."

@kathyjjb Clarification: 1. ID doctor told me she wanted me to wean off the inhaled steroids due to adverse effects on lung immunity.