MAC advise

Posted by msk @msk, Oct 24, 2022

Hello everyone
Its been while since I wrote to you all. I wanted to get some thoughts on your experiences after taking the meds and how you did.
I have been taking the 3 meds for MAC now for 9 months and my sputum is still positive. I have no major side effects but I feel exhausted all the time and not well.
My ethambutol was increased last month. I just feel like the meds are not working. I thought since they said I was mild to medium infection that it would clear it up. I guess I wasn’t as mild as they thought. My lung ct are not cleared either.
I do albuteral, saline 7% on my nebulizer and a flutter valve . I really do not see much help getting my sputum up.
My infectious disease doctor wants to send me back to Duke for another opinion. Don’t know about that. I was thinking maybe getting her to get me an appointment at Jewish health hospital for an opinion.
Would like to hear your thoughts. I am at a crossroads and need help.
Thank you all
Miriam

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northland | @northland | Nov 1, 2022

In reply to @sallyb827 "What type of surgery do they do for MAC?" + (show)

Hi, I had a VATS...video Assisted Thoracic Surgery. The surgery didn't take long, like 45 minutes. A person is usually in the hospital for 4 days and you have a drainage tube for 2-3 days PO. One may have nerve pain, I think that was the worst for me and the fact I can't take narcotics as I throw them all up. I don't do well with Tylenol, etc. either. They really don't want people to throw up and have that go into your lungs. I also had a particle lung collapse while in the hospital. One day I had 6 x-rays! So it was probably more painful for me than others...as they had to keep any pain meds at a minimum including Tylenol. After I got home, I sporadically took Tylenol or Ibuprofen for pain as needed for about a week. I had to get off those too then as my stomach couldn't take it any longer. Took about 4-6 weeks before I was feeling more myself again, I had lost more weight and my labs were all messed up and took that long to get back to eating again, etc. Hope this was helpful!

msk | @msk | Nov 3, 2022

Question on the inhaler amikacin. Would like to hear about experience with this med. my doctor prescribed it as next step because i have not converted after 10 mo of the 3 meds.
Thanks
Miriam

shirleye2 | @shirleye2 | Nov 4, 2022

In reply to @msk "Question on the inhaler amikacin. Would like to hear about experience with this med. my doctor..." + (show)

I've been on inhaled Amikacin since March. I have 5 neg sputum since then. Cautiously optimistic. I lost my voice but it slowly got better. Be sure to have your hearing checked routinely.

msk | @msk | Nov 4, 2022

In reply to @shirleye2 "I've been on inhaled Amikacin since March. I have 5 neg sputum since then. Cautiously optimistic...." + (show)

Thats good news. Getting my hearing checked and glad to hear not many side effects except hoarseness.
Thanks

kathyhg | @kathyhg | Nov 5, 2022

In reply to @shirleye2 "I've been on inhaled Amikacin since March. I have 5 neg sputum since then. Cautiously optimistic...." + (show)

Was that the only medication you were taking? Have you been nebulizing or anything else to support the treatment?
Thanks

shirleye2 | @shirleye2 | Nov 5, 2022

I nebulize Albuterol and 3% saline 2x/day, Anoro 1x/day, use the aerobika, use a percussion vest 2x / day and I'm also on the Big 3 everyday. I have cavitary MAC.

cila | @cila | Nov 5, 2022

Try to get appointment at NJH in Denver they are the best. Best of health!

lweirdo1 | @lweirdo1 | Nov 5, 2022

You sound pretty much just like me. I'm doing the Big 3, Albuterol, 7 % Saline & Arycayce. Not sure if I'm improving much as I now have very deep chest cold symptoms. My doctors are really not being too helpful and I see a bunch of them. Need a new plan of sorts and I'm "up for ideas" as well!

helenrivera | @helenrivera | Nov 6, 2022

I took have little hope for a future....My MAC has grown and I am doing every thing possible. I now have a 2nd mass from the CT results not previously seen. No call from my MD to advise. Just waiting for my next appointment. Trying to process this. This is the 1st I have said anything. Can't even discuss with my family as there trying to be optimistic.....Prayers for all.....

pw | @pawster | Nov 7, 2022

In reply to @helenrivera "I took have little hope for a future....My MAC has grown and I am doing every..." + (show)

It seems old woman's disease is not a very popular disease to investigate and improve the quality of life. I feel that there's very little but ancient remedies. I'm interested in everyone's input as to help! Best to you all! It's a very lonely disease. I fight it by doing a rigorous aerobic activity every day possible, staying positive, and fighting like heck all along the way. Professionals want to help, but the research needs to be there. It's not a disease that has money coming its way. Prayers to you all and keep seeing answers.