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Should I take Big 3 + inhaled ARIKAYCE
I am currently 48 year old, I have NTM- MAC with a couple of cavities (1.3 cm * 2.2cm , and 0.5cm* 0.5cm), the big one increased in size from last year ( it was 1.9cm * 1.2cm) and this small one (0.5cm* 0.5cm) is new. Also I have nodules in both lungs widespread. I am using Saline 7% but I don't know whether it helps with cavity. Also my sputum test turned from negative to positive this year. My doctor is concerned that the cavity will keep increasing in size and quantity so he wants me to start antibiotics as soon as possible. He is a great doctor.
I am deeply concerned about the side effects of big 3 + inhaled Arikayce, that my doctor is going to prescribe for me.
Do you think these antibiotics will help with MAC? I truly doubt about it. I did a lot of research, MCA is too hard to cure and it may come back. Not to mention the side effects... I also studies Sue's cases and she is doing really great with Saline 7% without extra antibiotics.
My doctor ( NY) also says they are going to study phage therapy next year. ( I shared my story about phage in Belgium in this forum ) But he says that any new type of antibiotics is not in the pipeline yet. So I am thinking maybe I should take antibiotics. He thinks maybe I can tolerate the medication because of my relatively young age. I don't have other diseases so far.
Do you have any suggestion for me? I am thinking of just closely monitoring with CT every three months. Really struggle with my decision.
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Phage in Belgium is only in experimental stage. Not likely to help at this time but I will follow up with them and provide an update. 🙂
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1 ReactionI fancy dancer,
Thanks for sharing.
So you are MAC free but caught other types of bacteria?
I hope you can get rid of all of them!!
Yes, that is correct. I can't seem to go more than 4 months without picking up something. The medicines work great for me. Thus far, no IV drugs needed, always a pill thank goodness.
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1 ReactionAnyone’s lungs feel hot like on fire several hours after using Arikayce?
Hi Reneemc!
I started Arikayce on 7/12/23 until 4/15/24 and do not recall hot lungs at any time.
Trust your situation will get resolved.
Flo @frankie160
within 2 to 3 months, one of my sputum samples turned negative. My docs thought that I needed to stay on Arikayce for 1 yr from the first negative sputum sample.
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1 ReactionHi, Helen1000,
I knew very little when a NTM Diagnosis was verified by my Pulmonologist
in 5/22. I followed my Doctor's lead and agreed to take the Big 3 which I started on a regular basis in 9/22 and by 5/23 with little or no symptoms.
The Doc then recommended I take Arikayce since I remained positive for MAC all along since starting treatment back in 9/23.
Within a very short time after taking Arikayce in 7/23, I turned negative and in 4/24 was taken off Arikayce because I did develop symptoms that were unacceptable. I have been asked to continue with the Big 3 until further notice. Hope this might help you make the right decision for you.
Flo @frankie160
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2 ReactionsFrankie 160, thanks so much for sharing. You went through a successful journey! Great for you! ! HUG! 🙂
For those who take arikayce, please do not forget to rinse your mouth with salt warm water, and a spoon of honey to sooth your throat, this may help you prevent hoarseness of voice.
Frankie 160, I wish you can try ginseng and ginger to help you warm the stomach. Pls check Kampo medicine in my post.
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1 ReactionThank you Helen. I thought that they actually were treating mac or pseudomonas.