MAC: Anyone ever felt pain from MAC? So many questions

@jr2366 Sorry to hear you have MAC. I know how out of control you feel, tis awful. It can take months for the MAC to go on meds and then you will also be on the meds after it is gone also. for the loss of voice I used Strepfen and they were fantastic, they are a lozenge, alot of people buy them online.
I also had pain in my right chest which went when my MAC went. Take care Heather

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Hi @jr2366 I am sorry you’re having problems but I know that Arikayce really can cause havoc with your throat in many ways and I did take the striepfen with my doctors approval with My arikayce and it worked great !! I think arikayce really helpped me a lot even though I only took it for a4 months because one of my labs went screwy for me but hopefully I’ll start back on it and they will monitor
my blood works more frequently and I can take the air case for a while. Best of luck to you don’t look back just keep moving ahead!!

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@jr2366 Yes Jennifer- welcome! Gina is correct. Many of us are now on Arikayce. And welcome! I will start by saying you will glean lots of information and insight into this disease from the people on Mayo Connect. I actually have a question for you. Did your doctor say why he went straight to Arikayce? It is my understanding that Arikayce is used for retractable MAC which is MAC that hasn’t responded to other treatment, is worsening, and/or the patient can’t continue on all of the previous meds. Arikayce is also $133,000 a year - around $ 11,000 per month! I had to apply for assistance with that huge piece. And there is paperwork back and forth in order to be approved for the phase 3 clinical trial that Arikayce is now in. Many people on this site have MAC but symptoms don’t warrant treatment. What symptoms do you have? Do you have a pulmonologist and an ID doctor? Did you get a second opinion? How were you diagnosed? Did you get training from a nurse on the use of Arikayce? It is quite a process and the nebulizer etc all have to be washed in special soap and sterilized afterwords. I’m just realizing I have lots of questions for you. I guess Jennifer I am just surprised that you are on Arikayce and no other MAC meds. If you google Arikayce it will tell you all that info. The only difference is that now you only need to be successful with two of the three other meds. Wishing you all the best, but please do your due diligence about this disease, and make sure you have doctors who are on top of your situation. Ask how many patients with MAC they have treated. Good luck! irene5

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Hi @jr2366 I am sorry you’re having problems but I know that Arikayce really can cause havoc with your throat in many ways and I did take the striepfen with my doctors approval with My arikayce and it worked great !! I think arikayce really helpped me a lot even though I only took it for a4 months because one of my labs went screwy for me but hopefully I’ll start back on it and they will monitor
my blood works more frequently and I can take the air case for a while. Best of luck to you don’t look back just keep moving ahead!!

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Reading your answers makes me feel like you are an extremely caring person. Thank you for being you.

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Hi Irene I’ve had a lung biopsy I’ve had a bronchoscopy which told me I had Mac/Mai no my dr did not mention the 3 medications only Arikayce I’m covered thankfully for the medicine. I am not sure why he went for the Arikayce on me my dr. My Pulmonologist is the one who put me on this Arikayce. I do have my moments I cry and don’t quite know how I got this that’s what’s frustrating also. I’m wondering if the medicine will work and if I can eventually be medication free for a little while after my 12-18 months I’m also scared that the medication won’t work but as I read the statistics it’s telling me the ratings are very good with fighting this Mac bacteria I’m hopeful I pray often . My husband is very Patient so far however it’s only been about 12 days on Arikayce I hope we both will get through this and we both live long kind of scared I’m not going to lie I need to know people have lived many years with this and I haven’t heard many people so far I’m the type of person. I need lots of positive talk about this Mac or I get very nervous as ling as I hear positive things it calms me down thanks for listening and you can write me back I would appreciate it

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Jennifer it is good that you have support within your family. Don’t stress too much about how you got this disease. My family first thought I got it at the dentist’s office because of the aerosolized water. Then we thought it was because of my teaching in old buildings for so many years. The long and short of all of that is it doesn’t really matter where - what matters is getting rid of it before it causes lung damage. There seems to be a body type with nodular MAC, and nodular MAC is slower growing than cavitory MAC. I think Terri our mentor explained that to you. MAC will wax and wane, and it is typically hard to get rid of. However, it is written that most people who have MAC die with MAC not from MAC. In other words you will most likely live a long life and die from something other than MAC. For you to stay positive I suggest you try mindfulness techniques, eat really healthy, and do physical activities as much as possible even if you don’t want to. I don’t know if you are a religious person or not, but the way I look at it, the good God’s got this so whenever I feel down about it I remember that. Each of us has a different journey with this, and I truly feel badly that you are so distraught. This group of intelligent, knowledgeable people will be here virtually to help. I can’t stress enough the importance of having both a pulmonologist and infectious disease doctor who work together for your benefit. Arikayce is really not meant to be used by itself but in conjunction with other meds. Some of us do three days a week and some seven. But these are things you really should talk to your infectious disease doctor about - before March! Wishing you less stress! Irene

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@jr2366 and @irene5 . Beautiful advice, Irene. The only thing I would add is to get copies of all reports and scans (on disc) for your own files and then go to see an expert for a second opinion. Many local pulmonologists know very little or just basics about MAC (including my own). Take the time to go to Mayo or National Jewish. It is so important to get started in the right direction with advice from a Dr that you trust. Go to the Best! By the way, you have stumbled upon perhaps the best support group a person could dream of. Kate

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