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Travel With Actemra/Tyenne Injectables: How to manage refrigeration?
Polymyalgia Rheumatica (PMR) | Last Active: 23 hours ago | Replies (5)Comment receiving replies
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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@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.