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.

@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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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?

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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

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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 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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@jr2366

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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Hello Jennifer – your feelings are very normal for someone newly diagnosed with a little-known illness.
The others who use/have used Arikayce can chime in here, but I'm pretty sure you need to report loss of voice to your doc. He may modify your regimen or have you take periodic breaks.
I should mention that Traditional Medicinals brand has 2 great herbal teas that can help – Throat Coat soothes the throat and Breathe Easy, which I drink every day, helps loosen mucus to clear lungs. They are available many places in the tea aisle – including Supermarkets, WalMart, and on line at Vitacost.com
Sue

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@jr2366

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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@jr2366 The voice thing or lack there of from using Arikayce does happen. I had that in the beginning, but I took a break and have been good with that ever since. I do have voice issues if I talk too much, so I just explain it to my kids, and they are very understanding. My friends are very supportive. You need to tell your friends you are not contagious to them – you are only contagious to yourself. And you probably should limit friend time if they are stressing you out and for your own health. I feel you need some serious help with this. #1 You are not alone! #2 It is ok to cry. You will go through the stages of grief more than once. Hopefully, you have a supportive spouse? #3 Ask your doctor why he or she did not start you on the Big 3 prior to Arikayce! #4There is no single cure for MAC. I wish there was- God willing there will be a cure someday. I feel like somebody should have had a heart to heart with you so you would know the pros and cons of medication. Vitamin D supplements are important as well as probiotics. Stress is not helpful. And I realize you are a mom, so stress is a given. Please go easy on yourself. Buy a book on mindfulness. My infectious disease doctor recommended that to me plus Garden of Life drinks because my weight remains an issue. Please, above all else understand that your journey with this will have highs and lows, but you are never alone with this group. Always listen to your body and its infinite wisdom and act accordingly. Be kind to yourself Jennifer. @irene5

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Hello Jennifer, @jr2366 To help with your voice try gargling with warm salt water after each Arikayce use. That will help clear away any residue of the drug from your vocal cords. Good luck to you.

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@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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@sueinmn

Hello Jennifer – your feelings are very normal for someone newly diagnosed with a little-known illness.
The others who use/have used Arikayce can chime in here, but I'm pretty sure you need to report loss of voice to your doc. He may modify your regimen or have you take periodic breaks.
I should mention that Traditional Medicinals brand has 2 great herbal teas that can help – Throat Coat soothes the throat and Breathe Easy, which I drink every day, helps loosen mucus to clear lungs. They are available many places in the tea aisle – including Supermarkets, WalMart, and on line at Vitacost.com
Sue

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That sounds great I’m going to try these teas if it goes on longer with my voice yes I will let my dr know for sure thanks so much

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