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

Posted by jr2366 (Jennifer) @jr2366, Dec 17, 2020

I was just diagnosed with Mac lung disease Just few weeks ago I would like to know if there’s any body who can give me some positive advice for me as I’m just learning about all this I’m currently on medication it’s an inhaler daily for this which I only started 2 days ago I have a year to 18 months to stay on this dr says. Medication is called Arikayce has anyone else been in this medicine ? I was wondering has anyone ever felt pain from MAC also. So many questions I’m sorry but any advice would help a lot thanks Jennifer

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@jr2366 Hi Jennifer, welcome. I was diagnosed 4 years ago. I was also diagnosed with Bronchiectasis at that time, as are so many others on this forum. I’ve never been on any medication but there are a lot of people on here who have been, and are taking, that medication. I’m sure they’ll jump in to help with any questions/concerns. I use an Atrovent pump in the morning, Aerobika device twice a day and nebulize 7% hypertonic saline at night before the Aerobika. Everyone on here is very friendly and the mentors are excellent.
All the best,
Gina

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Thanks so much Gina I will search and ask around stay well Gina I’m here if you ever want to speak I’m in New York

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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 @raykraemer. I'd like to add my welcome. Great photo. You might like to add it to your profile. Here's how:
– How to Update Your Profile https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

I see that you've also posted to a couple of related discussions that are good places to start like:
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/
– Chest and upper back pain with bronchiectasis and pseudomonas https://connect.mayoclinic.org/discussion/chest-and-upper-back-pain-with-bronchiectasis-and-pseudomonas/
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

I encourage you to browse through all the discussions in the MAC group. There's such a wealth of information that members have shared. And keep asking questions. We're here to help.

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@erikas

Hi @raykraemer. I'd like to add my welcome. Great photo. You might like to add it to your profile. Here's how:
– How to Update Your Profile https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

I see that you've also posted to a couple of related discussions that are good places to start like:
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/
– Chest and upper back pain with bronchiectasis and pseudomonas https://connect.mayoclinic.org/discussion/chest-and-upper-back-pain-with-bronchiectasis-and-pseudomonas/
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

I encourage you to browse through all the discussions in the MAC group. There's such a wealth of information that members have shared. And keep asking questions. We're here to help.

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Thanks so much I’m trying to figure out the profile pic I added a photo and not sure where it went and it was so large how embarrassing. Haha anyhows I’m learning a lot from this and appreciate it

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Welcome Jennifer, I also am a newcomer to this group…you have found a forum of caring sharing individuals with knowledge you may not receive from doctors. The experience that only a patient has, personal. Irene has very good questions and suggestions for you…follow up on those. As for your question about “pain”, here is my contribution. My Mac diagnosed this past October, presented with no other symptoms but pain. It was pain that threw me to the floor early one morning back in July 2020, disguised as what I believed was “angina” but my doctor (cardiologist) sent me to the emergency room for a suspect PE (pulmonary embolism). It was with the CAT scan during that visit that they realized my lungs were involved. The “pain” has never gone away, only changes in intensity and duration. I am so sensitive and insightful that I knew exactly where the pains were localizing…lower left lobe, upper right. My pulmonary doctor (as the ER doc) treated me for pneumonia with antibiotics and inhalers…unsuccessfully. Pain persisted, so I do what I do best…insisted. I insisted that they repeat the scan (before the scheduled 3 months), nodules and irregularity still appeared. Pain lived with me…and I was wearing out. As we have learned the lungs rest in the cavity in a posterior location (very layman language here) so a back sleeper like myself is miserable…and sleeps interrupted maybe 2 hours at a time. It was that misery and constant pain that pushed me to “insist” something be done. My Pulmonary doctor had cardiac workup done (again) because the pain was so intense and persistent, maybe pleurisy or pericarditis….I fought back with NO, this is from whatever is affecting my breathing and my lungs(I could not go up even a few stairs without being breathless). Pain continued. The bronchoscopy delivered enough villainous muck for a culture that confirmed MAC. Pain continued…sleepless nights added up. I was changed from an inhaler (with steroids to one without) to another….some relief, mind you minimal, but some. An ID (infectious disease) doctor joined my team, he is wonderful also, all my doctors communicate with me routinely, calling and writing, follow ups in clinic (important). I am now on the cocktail of Azithromycin, Ethambutol & Rifampin along with an inhaler. I do not nebulize like most others. Pain is lessening…I take that as a good sign…maybe meds are killing off this nasty bacterium.

Remember this, PAIN is a red flag. It is not to be ignored, it should be your guard that stands protectively in place that releases action…action that makes change. Honor your pain…be grateful for it…it will help you make them help you.

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@cmi

Welcome Jennifer, I also am a newcomer to this group…you have found a forum of caring sharing individuals with knowledge you may not receive from doctors. The experience that only a patient has, personal. Irene has very good questions and suggestions for you…follow up on those. As for your question about “pain”, here is my contribution. My Mac diagnosed this past October, presented with no other symptoms but pain. It was pain that threw me to the floor early one morning back in July 2020, disguised as what I believed was “angina” but my doctor (cardiologist) sent me to the emergency room for a suspect PE (pulmonary embolism). It was with the CAT scan during that visit that they realized my lungs were involved. The “pain” has never gone away, only changes in intensity and duration. I am so sensitive and insightful that I knew exactly where the pains were localizing…lower left lobe, upper right. My pulmonary doctor (as the ER doc) treated me for pneumonia with antibiotics and inhalers…unsuccessfully. Pain persisted, so I do what I do best…insisted. I insisted that they repeat the scan (before the scheduled 3 months), nodules and irregularity still appeared. Pain lived with me…and I was wearing out. As we have learned the lungs rest in the cavity in a posterior location (very layman language here) so a back sleeper like myself is miserable…and sleeps interrupted maybe 2 hours at a time. It was that misery and constant pain that pushed me to “insist” something be done. My Pulmonary doctor had cardiac workup done (again) because the pain was so intense and persistent, maybe pleurisy or pericarditis….I fought back with NO, this is from whatever is affecting my breathing and my lungs(I could not go up even a few stairs without being breathless). Pain continued. The bronchoscopy delivered enough villainous muck for a culture that confirmed MAC. Pain continued…sleepless nights added up. I was changed from an inhaler (with steroids to one without) to another….some relief, mind you minimal, but some. An ID (infectious disease) doctor joined my team, he is wonderful also, all my doctors communicate with me routinely, calling and writing, follow ups in clinic (important). I am now on the cocktail of Azithromycin, Ethambutol & Rifampin along with an inhaler. I do not nebulize like most others. Pain is lessening…I take that as a good sign…maybe meds are killing off this nasty bacterium.

Remember this, PAIN is a red flag. It is not to be ignored, it should be your guard that stands protectively in place that releases action…action that makes change. Honor your pain…be grateful for it…it will help you make them help you.

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What a great and detailed response. Thank you for describing your journey to diagnosis. As with so many of us, you had to be not only patient, but the advocate.

I am glad you found a good care team, because this is a long road back to health. I will suggest that you ask about nebulizing – maybe just saline – to encourage your body to thin and eliminate the mucus, which is a safe harbor for mycobacteria. You can read in this group about how much difference it has made for many of us, especially if we also have bronchiectasis, which makes our lungs less able to expel mucus through normal coughing. Some of us also use Mucinex (timed-release guaifenesin without decongestant) to further thin the mucus.

Good luck as you continue your treatment.

Sue

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Thank you Sue, the saline nebs are on my page of questions for my next pulmo visit.
Have a healthy happy holiday.

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@cmi

Thank you Sue, the saline nebs are on my page of questions for my next pulmo visit.
Have a healthy happy holiday.

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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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YES MYSYMPTOMS ABDOMINAL PAIN THt would put eventually put me on the floor sobing THREE MONTHS OF THAT AND ANOTHER THREE MONTHS OF BEING TOLD I HAD PSYCH ISSUE (NOT REAL PAIN) THE VA IN CHILLICOTHE OHIO REPORTED THE CULTURE AND THE afb AS NEGATIVE ANOTHER THREE WEEKS INFOREMED IM NOT CRAZY AND HAVE MAC INX. i STILL GTE STOMACH PAIN AND SUSCEPTIBLE TO EPIDIDYMITIS AND URI S. AND LETS NOT FORGET THAT 70 OF THOISE THAT CONTRACT MAC TB INFX END UP BEING DX WITH ADULT ONSET ASTHMA WITH IN 2 YEARS OF FINISHING MEDS /TREATMENT

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