Should I take Big 3 + inhaled ARIKAYCE

Rick, I think you should appeal even without lawyer. My last job was with people who were frequent admits to ER or hospital (for widely varying reasons). I learned that disability is almost routinely denied initially, but we had great success in sticking with the appeal process. They used to give back pay to date of application. I’m sorry it’s so difficult for people.

Good morning, I think it is case by case. Some people have worse side effects than others. But only 1-10% have the serious side effects. We can only take good care of ourselves and try to maintain the healthy weight to fight with it. It is also important to do baseline tests for hearing and eyes and do monthly or quarterly check up. As said, the more you read, the scarier you are. 🙂 Whenever there is a problem, there is a solution. Good luck to all of us!! Lets fight together!!!

I am sure you will stay healthy and strong!!! You did a lot of research and know very well how to protect yourself!! Cocojuene Yogurt is so appealing to me and thanks a lot for sharing. 🙂 It opened my mind as I am lactose intolerant :-),Your suggestions are so helpful to me!! In addition to healthy food, I am also suggested by my nutritionist to take probiotics culturelle ultimate strength, which has a special formula to take with antibiotics. My doctor also suggested me to take one probiotic I think it is better not to take so many which will interact with the antibiotics I will take. Another person also recommends SEED DS01 daily dose as it has so many strains of good bacteria ( Not sure whether anyone took SEEDS before and what is their experience) . I took a few days Culturelle but had stomach discomfort. I believe it is just the first couple of days and i wish it will get better with time going on.

Helen is 100% correct. It is worth the opportunity to rid yourself of Mac. If the side effects become unmanageable, tell your Dr and stop.

Rick, I think I was very scared because I will have to go through a lot. But I think I am also very lucky because the doctor is trying to get rid of MAC and there is a way. Right now with extensive research I did, I am less scary and more confident. I transition from being scary to being calm and confident. It took me a whole month. 🙂 I am so grateful to all the suggestions and advice given in this forum like Sue, you, Pam & Pam and many more.... Let's keep communication and find the root cause - solution and try to regain a whole new life!

I only have 5 months until full retirement age. My SS is pretty good, so 5 month difference of $7500 with Unum is not worth the stress. Unum did pay 6.5 months of STD, LTD, STD, back to LTD then a back to work letter. Each transition required each my Dr's to write a new letters and send all new medical records (and I have an extensive history). After 40 years of paying LTD premium's, Unum was pretty dirty. I do have an SSD claim pending until Dec (when I reach full retirement age) but at $100 difference per month, I might see a check for $500.

I understand not wanting that stress. Good luck to you.

I too was asked to give ARikayce a try. Its an inhaled antibiotic. The company provides financial asst for those who need it. Takes a few weeks to get approved. Insmed has a great support system with coordinators, trainers and pharmacist. I did eight treatments of the Arikayce with no guidance from my ID doctor. In hindsight, My Mac symptoms and colony count did not warrant this treatment. This is my second go round with MAC. I was not able to take ethambutol, so the ID doc went straight to Arikayce. I should of done my research on Arikayce first. I later found out it only had a 200 patient, clinical trial study done. I have been off of Arikayce for two weeks now.
In hindsight i should of only taken the inhalations three times a week, as i was not able to tolerate the daily regiment. I had most if not all of the side effects, which INSMED said were temporary. But they dont warn you about the possibility of the damage to your vocal cords. I completely lost my voice by the eighth treatment. They said it was temporary, lol, but wanted me to continue the inhalations even with new side effects. I am a working senior and need my voice for the phone work that i do. This side effect was not tolerable. So i had to stop the meds or loose my job and become homeless. But as i said my symptoms for MAC were minimal, i had no cough or sputum. This was discovered by accident in imaging, checking me for lung cancers. But what MAC symptoms i have explains alot of my issues. My voice has been gone for two months now, yes gone completely, no hoarseness, whispering, raspy. . . .just gone! My boss has been understanding so far. But my ID doctor either didnt have any experience with Arikayce or with MAC. So i am in search for a new ID doctor. RIght now i am on two oral meds of Rifampin and Azithromycin. I will continue that, as i have no issues. The oral meds been on board for three months now. I still have issues with short of breath and chest discomfort and fatigue. Ask about your colony count in the culture studies, ask how many patients they have on Arikayce, do they have clinical experience with MAC... . . i know that sounds strange but its good to know. This Arikayce was toxic for me, is all i am saying, i made the mistake of trusting my doctor. I was put on it with out any guidance or monitoring from the ID doctors office. But i do have lung nodules and my pulmonologist will do active surveillance with Cat scans. Until my voice returns i am not able to advocate for myself very effectively. Just proceed with caution.

I would be more terrified NOT to do the Arikayce. It is what actually shrunk my cavity and prevented more damage. The treatments take some getting used to but there is no getting used to the damage MAC can do without it.

Suzy, did you do daily
Treatment or MWF? I had to stop the daily, could not get guidance on a reduced schedule from anyone