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Overwhelmed… NTM Abscessus; Info Appreciated

Posted by tomed @tomed, 2 days ago

It took 8 months to figure out what was causing a constant cough, find the right specialists, and complete resistance tests. My spouse is starting treatment through the ID group ant Univ. of Penn with a home-administered cocktail of: Albuterol, Clofazimine, Nuzyra, Amikacin and Imipenem (IV.)

Am searching this site and others for resources and information on the meds and how to best manage this. It’s like drinking from a fire hose and we’re overwhelmed. Would sure appreciate information and resources - especially from patient and caregiver perspectives.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | 2 days ago

@tomed I am glad to hear that UPenn ( a very good center for NTM) has found the combination for your husband. Overwhelmed is a very common description of how most of us feel when starting the meds, whether for MAC or M Abscessus.
Here is a discussion that contains a few helpful links you can follow to connect with others who have had this specific infection:
https://connect.mayoclinic.org/discussion/antibiotics-for-m-abscessus/
Do the doctors have him starting the drugs one at a time to check his tolerance for each?

REPLY
tomed | @tomed | 2 days ago

Thank you! This is really helpful information. We’ve always appreciated the Mayo Clinic services when we are in Phoenix.

He did start each of the oral meds one at a time. Didn’t do well on Tedizolid so that was discontinued in favor of the inhaled and IV drugs. We’re waiting for the pharmacy and insurance to approve those two drugs. In the meantime we’re getting him set up with pulmonary, cardiology and hearing doctors to monitor side effects and with a home care for IV training/monitoring.

Is this contagious to others? (We often spend time with the grand kids and don’t want to spread anything.)

What a process! Thanks for the good words on Univ of Penn; hopefully this will be under control by the time we move back to Phoenix and can be monitored at Mayo.

Thanks again.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | 2 days ago
In reply to @tomed "Thank you! This is really helpful information. We’ve always appreciated the Mayo Clinic services when we..." + (show)
@tomed

Thank you! This is really helpful information. We’ve always appreciated the Mayo Clinic services when we are in Phoenix.

He did start each of the oral meds one at a time. Didn’t do well on Tedizolid so that was discontinued in favor of the inhaled and IV drugs. We’re waiting for the pharmacy and insurance to approve those two drugs. In the meantime we’re getting him set up with pulmonary, cardiology and hearing doctors to monitor side effects and with a home care for IV training/monitoring.

Is this contagious to others? (We often spend time with the grand kids and don’t want to spread anything.)

What a process! Thanks for the good words on Univ of Penn; hopefully this will be under control by the time we move back to Phoenix and can be monitored at Mayo.

Thanks again.

Jump to this post

You can breathe a sigh of relief - NTM (non-tubercular mycobacteria) is not contagious. In fact, if your grandkids are younger "germ factories" like ours, you are more likely to catch illnesses from them than to give them anything.

I wish your husband luck with his treatment.

REPLY
1 reply
pacathy | @pacathy | 1 day ago

You might find this thread helpful. Sue, our terrific mentor, included a video that might help.
https://connect.mayoclinic.org/discussion/info-treatment-for-mycobacterium-abscessus/

REPLY
tomed | @tomed | 1 day ago
In reply to @sueinmn "You can breathe a sigh of relief - NTM (non-tubercular mycobacteria) is not contagious. In fact,..." + (show)
@sueinmn

You can breathe a sigh of relief - NTM (non-tubercular mycobacteria) is not contagious. In fact, if your grandkids are younger "germ factories" like ours, you are more likely to catch illnesses from them than to give them anything.

I wish your husband luck with his treatment.

Jump to this post

Thanks!

REPLY
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