Airway clearance

Posted by maryjanechilds @maryjanechilds, Aug 17, 2023

I have MAC (found along with pseudomonas in a sputum culture)and Bronchiectasis. I was treated with Cipro for the pseudomonas and have been on the Big 3 for almost two months for the MAC. Every discussion I read talks about nebulizing with saline solution and daily airway clearance. I have no cough and am unable to cough up any mucous. I use my albuterol inhaler and then my accapella but do not produce any mucous. Does anyone else have “dry” MAC? I do have slight drainage down the back of my throat but I wonder if I could figure out how to clear out my lungs if I would get well faster.

Mary Jane

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

helen1000 | @helen1000 | Aug 31 12:31pm

It is very expensive But some program can reduce the price. I think someone mentioned it before.

laborday24 | @laborday24 | Aug 31 12:31pm

I went off big three after two years. Drug resistant to azythromycin. I am coughing more. Struggling with saline albuteral I actually feel like I can vomit. Going to national Jewish health in Denver in November. Praying they can help

formergardener | @formergardener | Aug 31 11:46pm

In reply to @laborday24 "Is arikayce easy to take and is it affordable" + (show)

I find the Arikayce very easy to take. I am on a MWF schedule. The retail cost before insurance is ridiculous. You get 4 boxes, each with 7 vials. That lasts one month if you use it daily, and two months or more if MWF. It retails for about $37K (I know!!!), but good insurance brings that down to $60 for me, and with their assistance program, some people pay even less. It is very effective!

formergardener | @formergardener | Aug 31 11:49pm

In reply to @helen1000 "We share the same feelings!! It makes us so much stronger!" + (show)

Helen, if I had not found this site, I would have been so filled with anxiety and fear. Now I know that there are others, and they are doing well and encourage us all. Doctors don’t have the time for all of our many questions and concerns all the time, but patients on this site completely understand and are so willing to help. It strikes me at how intelligent everyone is!

Mary | @mjb24 | Sep 1 8:04am

In reply to @laborday24 "Is arikayce easy to take and is it affordable" + (show)

Arikayce does not cost me anything because insurance covered it with a $200 copay and the drug company took care of the copay. My ID doctor set it all up. While I was at my appointment with him, he told me about Arikayce and that it was less toxic than IV Amikacin. His office completed the application and referral and the next day I received a call from the Arikares (Arikayce support team) coordinator that the insurance was approved. I then received a call from the trainer who scheduled a time to come to the house to show me how to use their supplied nebulizer. The pharmacy called also to schedule delivery and answer any questions. They continue to stay in touch and are always available if I have questions. It has been a very good experience for me. The best part is that I am able to tolerate the Arikayce and hopeful that it will help.

annagh | @annagh | Sep 1 9:48am

In reply to @reneemc "Is there a way to know if you’re coughing up mucus or saline?" + (show)

To me it feels like the saliva will flow and collect in the bottom of my mouth, and I could, more or less, let it drool out, while the mucus I actually have to force out.

Rick | @rstel7272 | Sep 2 7:24am

In reply to @formergardener "I find the Arikayce very easy to take. I am on a MWF schedule. The retail..." + (show)

After years of private insurance, I was glad to get on Medicare but the part D coverage is terrible and so widely different for these tier 4 & 5 drugs. Maybe some day our elected politicians will cover all of us over 65 equally. Even the doughnut hole change in 2025 does not address what is covered per plan

lilianna | @lilianna | Sep 2 7:58am

In reply to @laborday24 "I went off big three after two years. Drug resistant to azythromycin. I am coughing more...." + (show)

Laborday24 do you still have MAC after two years of treatment?

formergardener | @formergardener | Sep 2 1:12pm

In reply to @rstel7272 "After years of private insurance, I was glad to get on Medicare but the part D..." + (show)

Yes, Rick. We are fortunate that my husband’s medical coverage carries over into retirement, so when it is combined with Medicare, it is doable. Thankfully, Arikares provides support to patients who are prescribed Arikayce. You are right, Rick. The illness is difficult enough. Trying to cover the cost of treatment should not be something anyone has to face in a country as abundant as we have.