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Anyone Referred To National Jewish Health Due To Intolerance To Meds?
I was diagnosed with MAC in August 2022 and put on the big 3 3x per week. Initially I was okay other than gastro problems with the azithromycin but it wasn't all the time. However I started getting neuropathy and hearing loss. After 16 months, I couldn't tolerate the neuropathy any longer and had to get hearing aids so the doctor thought I was okay to quit the meds. Two months later I got a positive sputum sample. So now the doctor wanted to put me on azithromycin, rifabutin and Arikayce every day. I did the azithromycin the first week and it gave me gastro issues which I expected, then I added in the rifabutin and it got completely intolerable. I was bedridden and I had to stop. My new ID doctor (old one closed his practice), said I should try watchful waiting and diligent airway clearance. She is ordering a vest for me. However, my pulmonologist said I should consult a doctor at National Jewish Health. Has anyone else who could not tolerate the usual drug treatment gone to NJH? And if so, did they prescribe any different drugs for this that worked for you?
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@greeneyes8, thank you for your reply. May I ask what drugs were used to treat your MAC? My issue is that the azithromycin caused hearing loss and the ethambutol and rifampin caused neuropathy. Both issues have not improved. When the MAC came back, I was put on azithromycin again, rifabutin and Arikayce. I couldn't tolerate the azithromycin and rifabutin every day (I was on 3 days a week the first time) because they caused severe gastro problems. My new ID doctor took me off the drugs completely because I have very few symptoms, however, my pulmonologist suggested that maybe NJH would have a different treatment protocol they could offer me. I was wondering if anyone else had gone there who could not tolerate the big 3 and what may have been prescribed for them.
Linda1334, the first 18 months I was on Azith, Ethambutol and Rifampin. Within a year the MAC came back. I started the same 3 again, and within 6 weeks the Rifampin caused kidney failure (rare side effect with reintroduction) . Long story short my kidneys recovered pretty well over time, as good or better than many my age. A few months later when it was time to start the drugs again, I was given clofazimine in place of the rifampin along with Azith and Ethambutol and it worked. I have been MAC free for over a year now. I send in sputum samples quarterly. Still dealing with bronchiectasis and I have my next appt at NJH in September. If there is a different protocol that might work for you i would think NJH would be the place that would be able to help. I personally would be forever wondering if I should have gone if I hadnt and my condition got worse. They know all of the latest and greatest and would be the ones that can help with your intolerance to these drugs and offer a different protocol that might work. I hope this helps.
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1 ReactionCorrection, - I have been MAC free for 2 years. My how time flies.
@greeneyes8, thanks again for your reply. Those are the three I was on for 3 days/week initially. I have a follow up appointment with my new ID doctor tomorrow so I will discuss NJH with her. If she refers me, hopefully my insurance will approve it and then I'd go. There are a lot of hurdles to get over with regard to a visit to NJH. Congratulations on being MAC free for two years! That's fantastic!
Have you called your insurance and asked if you need a referral for NJH? I did not need a referral per Humana. I went in May and so happy I did. I was on Arikayce, Linezolid, and Nuzyra. NJH doctor immediately told me to stop the Arikayce due to side effects and cut the Linezolid dose in half. I did try the inhaled IV Amikacin, but by the end of 2 weeks, I was told my MABs count was so low, I could discontinue all meds-at least for now. NJH set me up with the Aerobika nebulizer, which I use morning and night. The vest gave me vertigo, so not using one. I cannot recommend NJH enough. You will have a team of highly skilled health professionals, that are up on the latest of research and ongoing studies for NTMs. Good luck!
@kathyjjb, yes my insurance requires a referral to NJH so I'll be talking with my doctor about pursuing that. Maybe they'd have another course of treatment they could put me on that would work better. I sure hope so. I'm just stressed about how long it may take to get to them with having to deal with the referral process, then the booking lead time at NJH, travel arrangements, etc. Kind of overwhelming but I will forge on. I will be doing the nebulizing with the Aerobika and I'm going to try the vest. I was just contacted to arrange an appointment for the respiratory therapist to come out and show me how to use it. So I'll see. Hopefully I can tolerate it. But I don't feel congested at all, even when I walk at 4 - 4.5 MPH on my treadmill for 45 minutes, I'm still fine. So I don't know if I will ever get anything up but I'll try. Thanks for telling me about your experience with NJH. It's very encouraging!
I'm sorry you had to go through all that with the meds. It sounds like you're doing much better. I think in many cases, the treatment is worse than the disease. Like you, I'm just keeping up with exercise, eating healthy, and airway clearance-religiously. I've been reading a few studies on culture reversion and how it can be due to both: reinfection and relapse. Scary.
I went to njh last November for 5 days. Had been on big three for two years. Drug resistant to azithromycin tried other drugs still have Mac. Having surgery September 4th to have partial lung removal. I tolerated the drugs just fine. No side effects. I was even on amakacin infusion had ringing in ears. That was the only side effect. Now am on aryksyce three days a week njh is great but found communication is lacking
Amazing how everyone reacts very differently to the drugs. For me it was very difficult and the second course was intolerable. So sorry to hear you need to have surgery and I wish you the best with that. I've read other accounts of having successful surgery and finally getting rid of the MAC for good. We'll all be thinking of you. Thanks for your response.