Has anyone carried on Arikayce when traveling?

Posted by kathyjjb @kathyjjb, May 17 9:44am

I'm going to Denver and bringing 2 weeks supply of Arikayce, has anyone experienced problems going through TSA?

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coffcoff | @coffcoff | May 17 10:21am

I've travelled with Arikayce in checked luggage with no problem. I carried on my nebulizer for AWC and again, no problem. Happy trails!

kathyjjb | @kathyjjb | May 17 10:53am

I read that Arikayce doesn't recommend the checked luggage due to lack of temperature control in baggage claim.

Sue, Volunteer Mentor | @sueinmn | May 17 3:17pm

In reply to @kathyjjb "I read that Arikayce doesn't recommend the checked luggage due to lack of temperature control in..." + (show)

We have carried both nebulized and injected (on ice if required) medications on the plane, as well as nebulizer. When placed in a separate carry-on, they are considered "Medical Equipment" and do not count against allowable luggage.

kathyjjb | @kathyjjb | May 17 7:42pm

In reply to @sueinmn "We have carried both nebulized and injected (on ice if required) medications on the plane, as..." + (show)

Hi Sue, I did talk to an Arikayce pharmacist, and she confirmed the same. That said, it's nice to have confirmation from someone that actually went through TSA. Thank you! I did find online that medications are exempt from TSA 3-1-1 rule, nothing about medical equipment-good to know!

Sue, Volunteer Mentor | @sueinmn | May 17 9:38pm

In reply to @kathyjjb "Hi Sue, I did talk to an Arikayce pharmacist, and she confirmed the same. That said,..." + (show)

Yes, at one time I even traveled with my post-surgical cold machine (for use at destination) plus gel ice packs for use on the plane. TSA was curious and did a manual exam as well as X-rays, but no issues. They even let me wear my hard sling/brace and did a manual exam. And leave my shoes on.
I was traveling between small airports, but if I was going through big ones I would gladly request accommodation-courtesy cart or trolley to save my energy.

kathyjjb | @kathyjjb | May 18 12:25pm

In reply to @sueinmn "Yes, at one time I even traveled with my post-surgical cold machine (for use at destination)..." + (show)

That's so good to hear. I was really worried. Fortunately, Arikace can go to room temperature for up to 28 days. I'm only going to be gone for 12 days, so I will just keep it in my bag-no cooler. I was planning on packing it with my suitcase but then read that it needs to stay within 44- and 77-degrees F, and if it freezes (which it can at high altitudes), it's not usable. I probably won't need a courtesy but who knows with all my side effects. I was taking Nuzyra at 10 PM and it gave me insomnia, I'm usually out when my head hits the pillow and after 2 nights of trouble sleeping, looked up the side effect and insomnia was one of them. Now, I'm setting alarm and taking at 3 AM. Hard to take during the day due to the 6 hour fasting requirement and Linezolid is makes me nauseated (plus diarrhea) so I want to take at least 4 hours apart from the Nuzyra. Seems, like they are all giving me side effects. Arikayce makes me short of breath, lost my voice, and probably contributing to the fatigue. I'm only 2 weeks in.