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Cavitary MAC - what makes cavity shrink?
Happy new year everyone,
I have been doing some research on Cavitary MAC - as I see some people's cavities shrink/close fast. I try to figure out what shrink a cavity. Is it based on drug sensitivity test? If you are sensitive to Arikayce, your cavity shrink fast? Or if your lung ventilation/air flow is better, the medicine can get into cavity quickly? Why some people's cavities are stubborn while some others' go away fast?
I checked with a few doctors and they all have different opinions. Some said cavity never goes away, some advise me to try arikayce. Some say that my cavity has a 50% chance to close. NJH says that a cavity less than 2cm has a better chance to close. Some patients have 3cm cavity ( thick walled) still close quickly. Some others have cavity for over 18 months and still there. So what is the deciding factor?
Any input will be appreciated. I wish everyone regain their health in 2025!
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The mac sample was shown to be vulnerable to amikacin and Arikayce. Because I was recently diagnosed with Parkinson's, my ID doc wants me to use an inhaled version of the medication instead of IV since there is less of a chance of neurological side effects.
Regarding the new research article posted by Carolyn, there is a recent mouse study that showed that the diabetes drug Metformin could be beneficial against MAC. What works on mice doesn't always help humans, but perhaps someone will fund a clinical trial.
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1463224/full
I see. That is very luck of you! You made a lot of efforts in your side. Congratulations and thanks for sharing.
I have been using amikacin inhaled for 5 months, so far I did not experience any side effect. It does not happen to everyone.
I have heard many good things about Metformin Wolfplanetzero. Its main side effect is GI problem. I will discuss it with my pulmonologist and let you know.
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1 ReactionI hope you get the results you want. Amikaycin is my last ditch effort if it gets really bad. Thanks and good luck to you!
Yes bluespalshgirl, If you do the research on the side effects of arikayce, they are limited to 1% to 10% of all patients. Even for hearing loss, it is less than 50%. I hope this info helps. For any drug, if it has a very high rates of side effects to everyone, FDA probably won't approve it.
It does have a high rate of side effects and ARIKAYCE was approved by FDA using the Limited Population pathway.
Yes I know. The percentage is 1%- 10%, not over 50%. I know this is still high, but it is not applied to everyone.
I drink ginger juice everyday ( boil thumb sized ginger for 15 mins with 2 cups of water) and drink it, which alleviates the nausea of antibiotics very well. I did not drink it for three weeks and lost my good appetite because I was out of state in NJH and then went on a school tour with my daughter. After I came back home. I started to use it then my nausea was gone after three days. I think my appetite will recover after a few days too. By the way, I use organic ginger sold in grocery stores.
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1 ReactionHow was your experience at njh. I was there in November. They were great but my records did not get there until right before Christmas. Have not started my treatment yet. Amakacin infusion plus 4 oral antibiotics. My id Dr asked about surgery
HI Laborday24, I was in NJH in December. They gave me many opportunities to ask questions, including 4 meetings with doctors, 1 meeting with a surgeon, and 2 meetings with a NP. I do have a lot of questions and get most of the answers. They also gave me some information about my treatment plan, my chance for cavity to close and what to expect after surgery, etc. It is a very thorough analysis. I do hope they can tell me that your MAC can be cured, but it is so hard to get, LOL, which I believe common efforts of both patients and doctors.