Newbie here. Scared and overwhelmed by MAC treatment plan

Thanks for your reply. The doctor I had during the trial is a world leading specialist in NTM/MAC. The consultant overseeing my care after admission last week told me I HAVE to have ethambutol and Rifampicin alongside amikaycin (IV initially) and ethambutol on the regimen as only having a 2-drug regime has very high risk of making the mycobacteria avium anti biotic resistant. I have done extensive research over many months (not quackery but bonafide clinical data) that correlates with the opinion that rifampicin may have little of no benefit in treating MAC successfully. I’m currently awaiting results on my latest sputum sample to determine whether, now, I am already anti biotic resistant.

Thanks so much for your reassuring reply. I’ve now decided to wait for sputum results - the lab is checking it for antibiotic resistance so fingers crossed. I’m greatly encouraged by all the positive replies from you all.

I have Serratia marcescens. Please check with your local hospital about the infusions. I had a PICC line put in at our fairly new infusion center. The nurses were specifically trained to give infusions. I hope your local hospital is up to date.

I am very sorry you had a bad experience with your trial and am surprised and very sorry you feel you weren't given all the information to make an informed decision. You should have been..

I feel I have to speak up for the huge benefits of properly run trials. Without them, we wouldn't know if ANY drugs were really effective and as you know, we NEED new ones for MAC and bronchiectasis. Also, I'm hoping to be approved for the first new treatment in 10 years for another fairly rare condition and we know it works for some ONLY because a lot of people were willing to be in trials. I'm grateful to them.

I can also personally attest to the benefits of drug trials. My late husband participated in one years ago for a fatal blood cancer. Instead of one year with conventional therapy, he got FIVE years with the last 4 being good years. The staff and physicians who explained and did the trial were excellent, caring and thorough. I'm sorry that thoroughness and explanation of risks didn't happen for you.

I've thought about your post since I saw it. If the consent didn't include all the risks, contacting the institutional review board at the medical center who approved the study would be a useful step. Tell them their consents need to include all the risks and yours did not. They need to ensure that doesn't happen again.

I hope you find a physician you're comfortable with and a treatment that works. .

@gemini1956
FYI: The Tyler BE specialist, Dr. McShane, who had suggested I do anti biotics did not prescribe the rifampin for my MAI infection.
Barbara

Like some of the others I experienced very little in the way of side effects from the big three meds. I’m free of MAI now but am being treated for M Abscessus which is much tougher!
Good luck to you.

Thank you so much for letting me know that your consultant didn’t make Rifampicin part of your antibiotic regime. I hope you’re fairing well and that everyone in this community are staying strong and positive. 🙏🙏

Thank you for sharing. You rarely hear about those who do as well as you with MAC treatment. Gives me hope. So sorry your battle continues.

Obviously, it’s a lot to digest. But this disease is extremely slow in its progression, as my first pulmonologist once told me. And each patient’s response is different. With Bronchiectasis since 2003, I’ve had two Mac infections, treatment with big 3, removal of rt. mid. lobe. But now I’m 76, play pickleball two hours a day, take no meds, and feel lucky! Hang in there!

Oh thank you! I’m just so scared and sad. So glad to hear life for you has so much activity! I hope to be as lucky. Just seems like so much doom and gloom and of course I am convinced I will get every side effect and won’t be able to complete treatment.