Arikayce ? changes in chest xray & CT

Posted by tte @tte, Aug 2 11:58am

Has anyone else had worsening chest Xray or Lung CT results after using Arikayce daily for 5 months or longer?

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Hi

I have been on Arikayce for ten months. My most recent Lung CT is deemed "Stable" with some areas clearer but some worse. I guess, having seen your query, I'm wondering if there is a connection related to Arikayce?

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@tte @marmee26 The first question for you both is: has your sputum converted to negative? That is the first obstacle. If not, given how long you have been on Arikayce, I would talk to your doctor about switching up your drug regimen. If your sputum has converted, then what my doctor (NJH) told me is sometimes with treatment the CT gets worse before it gets better and the question they ask is has it gotten worse in a way that makes them “nervous”. They didn’t quantify what that would look like and I assume it is specific to your particular circumstances. But their comments were not limited to patients on Arikayce (yes, I am on Arikayce, just started). That your CT has gotten worse could be a sign the drug regimen your on is not working (Arikayce doesn’t work for everyone) or it could just be what my doctor spoke to, in terms of a CT getting worse before it gets better. These are questions best asked of your treating physicians. In sum, my NJH doctor said you can’t look at any one component to assess treatment (I.e. symptoms, sputum, CT). You have to evaluate effectiveness of treatment based on all three, and it’s not always straightforward.

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Profile picture for bayarea58 @bayarea58

@tte @marmee26 The first question for you both is: has your sputum converted to negative? That is the first obstacle. If not, given how long you have been on Arikayce, I would talk to your doctor about switching up your drug regimen. If your sputum has converted, then what my doctor (NJH) told me is sometimes with treatment the CT gets worse before it gets better and the question they ask is has it gotten worse in a way that makes them “nervous”. They didn’t quantify what that would look like and I assume it is specific to your particular circumstances. But their comments were not limited to patients on Arikayce (yes, I am on Arikayce, just started). That your CT has gotten worse could be a sign the drug regimen your on is not working (Arikayce doesn’t work for everyone) or it could just be what my doctor spoke to, in terms of a CT getting worse before it gets better. These are questions best asked of your treating physicians. In sum, my NJH doctor said you can’t look at any one component to assess treatment (I.e. symptoms, sputum, CT). You have to evaluate effectiveness of treatment based on all three, and it’s not always straightforward.

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Thank you for your response @bayarea58. Yes, I have had two negative sputum cultures over the last six months and will submit additional sputum cultures later this month. The insight you provided from the NJH doctor was helpful. I was putting more weight on the radiographic findings over the sputum cultures. At this point, I’ll keep moving forward with my current treatment plan. Thanks again.

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