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Travel With Actemra/Tyenne Injectables: How to manage refrigeration?
If you are on Actemra or Tyenne injectables and travel for weeks at a time, how are you managing the refrigeration needs of the injectables vs. the short shelf life if they happen to warm to room temp?
I am on Tyenne and it's shelf life once at room temp is only two weeks, so if I away from home for a month or more, I am concerned and want to find a TSA approved travel carrier that will stay cool for 8-12 hours to support travel abroad and/or travel interruption events. Tyenne cannot be re-refrigerated once warmed to room temp, so I see this as a real risk. I do not want to find out how to replace injectables once in a foreign country, that sounds like a nightmare to me.
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Travel is one of the reasons why I no longer do Actemra injections. My experience with the injections while traveling was a hassle. TSA wasn't the problem. My carrier worked with the frozen thing inside the carrier. The frozen thing inside the carrier was most of the hassle --- I never knew where a freezer would be to freeze it again. Having a refrigerator when I needed one wasn't guaranteed either.
Now I do monthly Actemra infusions. The original reason I switched to Actemra infusions was to facilitate having surgery. The surgeon wanted me to be off Actemra for a month before surgery and a month after surgery. There was no way I could go 2 months without doing an Actemra injection. It was almost possible to go 2 months between infusions but that was stretching it a bit too far.
The interesting thing that happened involved why I needed surgery on my spine in the first place. A synovial cyst formed on my lumbar spine and caused severe spinal stenosis. Compression on my spinal cord was very painful.
Synovial cysts usually form when chronic inflammation is present. When I was doing Actemra infusions the synovial cyst shrunk and was reabsorbed so surgery was postponed. I was told it was very rare for a large synovial cyst to disappear like it did. The speculation was that the Actemra infusion stopped the inflammation which made the synovial cyst shrink and eventually it disappeared. For this reason my rheumatologist said to keep doing the monthly Actemra infusions.
Now when I travel ... I do an infusion before leaving and an infusion when I return home. I don't worry about the injections and I can be away from home for up to 6 weeks before I need another infusion. When I'm traveling, my rheumatolgist writes a prescription for some Prednisone just in case I might need some.
It is possible to switch from an injection to an infusion and back to an injection if you prefer injections. The main thing is to coordinate with your doctor. You might want to do a trial of an infusion to see if it controls the inflammation for a month before traveling.
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4 ReactionsI use a 4ALLFAMILY Voyager that I purchased on Amazon, along with a
USB Portable Charger 38800mAh. The USB charger fit in the pocket
of the carrier. It keeps the inside between 37 and 46 degrees
and can hold 4 Actemra syringes. I took it on several flights, including
a 9 hour plane flight (13 hours total travel)with no problems.
At the airport, I sent it thru TSA separately from everything else, it WILL get pulled
aside so make sure to tell them that it has syringes inside. The TSA agent will usually
ask you to open it for them to inspect. It does not count as a carry-on since its a medical
thing.
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5 ReactionsI have a small soft cooler provided by Abbie. Check with your manufacturer.
It uses two ice small gel pacs. Labeled and TSA is aware of these. Like my
CPAP it is allowed and should not consider as an extra carry.
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2 ReactionsI use the 4ALLFAMILY Nomad. I can fit three injectables and have used out of the country on three week trips. The freezer pack works for about 3 days. Most of the room refrigerators haven’t kept things really cool so I remove the cooling block and use ice in a zip lock bag inside the container. I also put my injectables in a zip lock. No issues with security. I do like the idea mentioned above of the plug in cooler.
@dadcue First, thank you for your reply - interesting approach. I am especially sensitive to drugs and as such once something I am taking is working I suspect I would never consider switching from one form to another form. An example, I can take the Brand of my blood pressure med and mange my BP well, if I take the generic I land in the cardiac care unit of the local hospital with stroke level BP. It has happened twice, once assuming generic would work, the second time the pharmacy ignored the "Brand Only" note. Second example, I will get hives if I take Tylenol for more than a week - even at low levels. Technically there is no such thing as an allergy to Tylenol, however my allergist tells me to steer clear and agrees that Tylenol is setting off the hives. I am also allergic to all non-steroidals like aspirin, Advil, Aleve - so I have limited pain control options. I suspect if I told my doctor I wanted to try switching between infusions and injections they would put an "At You Own Risk" disclaimer on each Rx.