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

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Liked by ginak

@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

Liked by ginak

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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

Liked by lorifilipek

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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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@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.

Jump to this post

Thanks for this update on what you were going through can I ask you what inhaler you were on because my pulmonologist has me in Arikayce through a small nebulizer that’s it once a day I’m in this for 6 days now I still do have pain which gets me nervous but it’s not really bad there were days I wanted to cry from the pain . I have been boiling my water that I drink because now I feel like I’m scared to drink anything eles I do drink bottled water . Have you ever heard of the medicine I’m on what do you think?

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@jr2366

Thanks for this update on what you were going through can I ask you what inhaler you were on because my pulmonologist has me in Arikayce through a small nebulizer that’s it once a day I’m in this for 6 days now I still do have pain which gets me nervous but it’s not really bad there were days I wanted to cry from the pain . I have been boiling my water that I drink because now I feel like I’m scared to drink anything eles I do drink bottled water . Have you ever heard of the medicine I’m on what do you think?

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Jennifer –
I know we always want to think medicine will quickly make us feel better, but when it comes to MAC, "it's slow to grow and slow to go." I'm pretty sure my pain levels didn't diminish significantly until I was on the Big 3 antibiotics for over 4 months, and the wracking cough took at least 6 months.

It takes some time to come to terms with a long-term condition like bronchiectasis, and an infection like MAC, but you can learn to become cautious and not afraid. I think learning is the key – National Jewish Health (NJH) has a marvelous NTM/MAC & Bronchiectasis program, with an annual (I think) conference. Here are some learning videos from one a couple years ago: https://www.nationaljewish.org/ntmvideos2016

When first diagnosed 2 1/2 years ago, I was afraid to do anything without a mask, afraid to drink water or shower, afraid to open my windows, afraid to be around anyone who sneezed… Over time I have decided to live with Bronch and MAC in a more relaxed way – I take reasonable precautions like no hot tubs, turned up water heater, .2 micron water filter, mask when in garden working the soil… During Covid, my husband and I have lived in relative isolation – except for a select few isolating friends and our work-from-home, careful kids. We take every recommended precaution, and actually adopted routine mask-wearing before April 1st.

I also do regular lung clearance with 7% saline neb and Aerobika (vibratory lung clearance device), use Mucinex to keep secretions loose, use my asthma neb as needed. Both NJH and my care team believe the routine airway clearance is a critical component, and if I skip more than a day, I get lung discomfort still.

Sue

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@jr2366

Thanks for this update on what you were going through can I ask you what inhaler you were on because my pulmonologist has me in Arikayce through a small nebulizer that’s it once a day I’m in this for 6 days now I still do have pain which gets me nervous but it’s not really bad there were days I wanted to cry from the pain . I have been boiling my water that I drink because now I feel like I’m scared to drink anything eles I do drink bottled water . Have you ever heard of the medicine I’m on what do you think?

Jump to this post

jr2366. Hi Jennifer. I have been taking Arikace for just over a year. Initially I was taking it every day and lost my voice completely so my pulmonologist suggested that I do every other day. After a week or so of that dosage my voice gradually came back.
As for the water, I was under the impression that it was inhaled droplets or mist that is dangerous, not something that is ingested, but if I am wrong then I hope someone here on the forum will correct me. I use my keurig every day! I do clean it with vinegar solution.
I was diagnosed with bronchiectasis and Mac several years ago. It was determined by my first pulmonologist that I was not a good candidate for the big three. I have heart rhythm problems. I have never had any pain with my Mac but I coughed badly for a couple of years before being diagnosed and had a couple of episodes of hemoptasis. I also have a hiatal hernia and sleep apnea and most probably aspirated the bacterial infection into my lungs.
This forum has been a Godsend for me. Though I don’t post often, I read everyday and have learned so much from the wonderful and caring people who share their health journeys with us all. You will learn so much from them.
Many blessings, Candy

Liked by lorifilipek

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@jr2366

Thanks for this update on what you were going through can I ask you what inhaler you were on because my pulmonologist has me in Arikayce through a small nebulizer that’s it once a day I’m in this for 6 days now I still do have pain which gets me nervous but it’s not really bad there were days I wanted to cry from the pain . I have been boiling my water that I drink because now I feel like I’m scared to drink anything eles I do drink bottled water . Have you ever heard of the medicine I’m on what do you think?

Jump to this post

Jennifer, I have no personal experience with Arikayce…others on this forum do though. When I asked my ID doctor about Arikayce, he said it “was very very expensive and given to patients that other treatment had not been possible/effective”. My inhaler is Breo 100mcg (it replaced my Asmanex). Why are you boiling your water?

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Sue thanks for that information and website you gave me I’m sure it will be helpful for me, sue my doctor has me on Arikayce and that’s it I’m a little afraid about this whole thing g cause I’m not sure how long it takes before this Mac I have when the medicine will start actually work because it’s only been 1 week I’m on this medicine. I can’t stop thinking about this whole thing sue. I boil the water I drink, I do wear masks when I’m out in stores we have to anyhows. I’m so afraid of getting a cold or sick because usually when I do get sick it goes into my lungs I’m so so scared I’m constantly washing my hands afraid to touch my face even if I have an itch since I’ve been diagnosed for Mac I’ve been ok. Sue as of yesterday I lost my voice because it’s one of the side effects of using the medicine and I pray my voice comes back soon because now friends may think I’m sick and I’m not ugggh this is really frustrating to me I feel a little alone I can’t help it I want to cry sometimes I appreciate your help so much

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