1. < MAC & Bronchiectasis

Why Dr has NOT prescribed me Rifampin for MAC/NTM?

Posted by bellsina71 @bellsina71, Mar 25, 2023

Good Afternoon Village!

I was recently diagnosed with MAC I have a 3.7 CM hole in my lung. My infectious disease doctor started me on my medication about a month ago; ethambutol and azithromycin PLUS my doctor will be putting me on an inhaler that's medicated but it's very expensive so I have to wait until I'm on these meds for a few months (I'm not sure what that's called). He has not mentioned putting me on Rifampin or even mention that drug. I'm just curious what the reason would be since it seems everyone else is on all three of these and I'm on two of them. My doctor did tell me that my case is mild although I do have a hole in my lung?!?! My doctor does have extremely great reviews, and has said he treats a lot of Mac patients but I'm just curious if anyone else has only been put on a couple drugs and not all three? Like I said I'm supposed to get the inhaler too in a few months. If anyone has any information or similar experience please let me know. I appreciate it 😊!!! Thank you all-
Angela

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bellsina71 | @bellsina71 | Mar 27, 2023

I love that! God is dog backwards😊 that is so true! I have never been a dog person but one day a few years ago I was coming home from work and saw this little white dog running around in traffic, he had a men's tie wrapped around his neck and his white fur was stained yellow with urine. After numerous attempts I finally grabbed the tie which was soaked with urine also, and he went right with me...Like we were friends forever! No more barking, he just resigned himself to the fact that he was caught. I took him home cleaned him up and then took him right to the vet. He wasn't old.. maybe a year to a year and a half, and the vet thought he was being used as a breeder. It took a couple of months for the yellow fur to grow out and for it to be white again. It is such abuse to have a dog and treat it like that! He's been with me ever since and he is spoiled rotten, as he should be. He is the cutest little guy! So full of love and he is always by me, sitting by me or sitting on me. I don't know how anyone could have had him in a cage and let him sit in his own urine like that. I just don't understand it. I'm so grateful for him, he has really gotten me through some tough times and I never knew I like dogs until him! Anyway I just wanted to let you know how much I loved that. I never heard that before🐶🐾

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dlynn1210 | @dlynn1210 | Apr 16, 2023
In reply to @fdixon63 "Hi Irene5. I was put on the Big 3 when first diagnosed 4 years ago--nausea, lost..." + (show)
@fdixon63

Hi Irene5. I was put on the Big 3 when first diagnosed 4 years ago--nausea, lost weight, energy and appetite. Had to stop after 6 weeks. I've done airway clearance through nebbing saline, vest, etc. My current pulmonary doc is beginning co-partnering with an infection disease doc. I have an appointment in three weeks. My lungs have gotten much worse so hoping they will consider Arikayce without doing the big 3 again. Do you inhale it and is the sterilizing process the same as for cleaning the regular neb kits? For example, warm soapy water for 20 mins, rinse and steaming in microwave bag. Also do you have to have a special neb kit. When I did Tobramycin I had to use the Pari-LC. Thanks much.

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I’ve been on the big 3 for three years and have also experienced weight loss (125 lbs down to 94.6 since last Fall), no appetite, and no energy. I saw one pulmonologist soon after diagnosis but then referred to one in network. I saw another pulmonologist (#3) and not one has mentioned seeing an infectious disease doctor until I read it here.

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frankie160 | @frankie160 | Jun 22, 2023
In reply to @shirleye2 "I started Arikayce right away because I have a lung cavity with MAC. I was quoted..." + (show)
@shirleye2

I started Arikayce right away because I have a lung cavity with MAC. I was quoted the same cost and pay nothing because of the Assistance program. Now on it for 12 months and have tested negative for the last 10. Also on the Big 3. So it appears to work.

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@shirleye2 and Sue, our Mentor and other members ,
Hi there and to others who have had experience with Arikayce. My Pulm Doc has recommended I start Arikayce and was approved for the Assistance program as well. I will be nebbing the Arikayce along with the Big 3 . But before starting, I'm doing research and checking in with our group members, who in my mind are most knowledgeable and very sharp about these matters. I've been very fortunate to find this group.
My main question right now is what side effects or adverse symptoms have you experienced (mild and/or strong) using Arikayce over time? And how have you and your doc been able to mitigate the side effects?
Thank you in advance for any thoughts at all.
Flo@frankie160

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shirleye2 | @shirleye2 | Jun 22, 2023

I was on inhaled Arikayce for 15 months. I have slight hearing loss and dud have a hoarse voice. I saw an ENT doctor for hearing tests every 3 months eye test and bloodwork as well. I was also on the Big 3. It worked and did test negative for MAC for 12 months. Took some time to adjust to.

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dulwich | @dulwich | Jun 22, 2023

Although they say to start Arikayce daily, you might want to ease into it less frequently
Hoarseness seems pretty universal in first couple of weeks and if it gets too bad, you will need to stop and start over at lower frequency in any case
Also had big increase in sputum for a couple of months and mild bronchospasm but it worked within 2 months and I stayed MAC free
Good luck!

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