Long distance travel with Actemra?

[Happyexplorer]

Apologies if this seems lightweight, in view of the serious stresses others on this forum are suffering, but does anyone have recent info on travelling with several months supply of ACTEMRA (TCZ)?

I am coming from Aus to UK for 3 mths and purchased a special medi-cold box which keeps the injections under 10 degs for nearly 24 hours but not much beyond which is not quite long enough, allowing for a UAE layover and 3 hrs at the airport pre flight. Also it uses two large cold blocks containing coolant way over 100mls. I have searched previous posts and there are some from 4-6yrs ago sharing some awful stories of customs and/or security taking the injections out and objecting to the cold packs because of the amount of coolant they hold, despite letters from a Dr and prescriptions being available.

Most airlines still state that one cannot take more medication than is needed for the journey and the rest to go in the hold-clearly not possible for TCZ as it needs to be 2-8degs but not frozen.

Roche medical info not able to say much other than confirming vials can be at room temp for up to 8hrs but not more, and refer me to the airline….. who are very hard to get hold of and just repeat the ‘official’ statement that one can take enough meds for the journey and beyond that it’s at the discretion of airport staff!

Unfortunately there is no way of using my ‘script to obtain TCZ in UK and I am now exploring the option of sending the bulk of injections via Fedex ‘cold pack’ service where they use dry ice to keep the temps constant, which is very expensive but sounds reliable.

Any advice gratefully received!

[DorsetLady PMRGCAuk volunteer]

No question is too lightweight- sure this question has come up before, so you’ll get answers….although maybe not as long haul with a stopover as yours will be.

If I can find previous discussions will link..

8 months ago -

healthunlocked.com/pmrgcauk...

2 years ago - healthunlocked.com/pmrgcauk...

[Happyexplorer in reply to DorsetLady]

Thanks so much for the extra links! Travel regulations change so often these days I thought I should recheck.... I have decided against Fedex dry ice as it actually freezes the drugs and I will arm myself with good paperwork and trust in the kindness/common sense of security and airline staff as I carry on my chilled bag!

Thanks again DL and happy Easter 🐣 🙏🌻

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

Let them know in advance as well -and get paperwork from them if possible.Thanks, happy Easter to you too.

[PMRpro Ambassador]

That's not lightweight at all! It is a conundrum I may be facing soon. Pre-Brexit it wouldn't have been such a problem for me with reciprocal arrrangement being possible for essential medical treatments like dialysis but now ...

Some people are on infusions of TCZ for various reasons (that's what their rheumy uses or because of supply problems) - that gives you a month grace between needing it. But what happens after that month?

[Happyexplorer in reply to PMRpro]

Thanks so much PMPRO, you and DL are just amazing with your prompt and helpful responses- it's a full time job for you both!I'll keep delving and keep the forum posted, but am sure in the end they'll take pity on an elderly lady who 'means well'🤞😉🤷🏻‍♀️

[DorsetLady PMRGCAuk volunteer in reply to Happyexplorer]

🤣😂

[Happyexplorer]

PS I should have added that I've decided to add an extra cold block to my cold pack and have the plane staff stick it in their freezer during the flight so I can add it in after 14 hrs. That, plus the extra 8hrs possible at room temp, should get me through to arrival in London! Unless I get better suggestions, I'll consider it sorted😱😂Thanks again!

[Sharitone]

I just had the same experience with Roche UK - referred me to HS Choices website, which had precisely nothing to say about TCZ, Actemra, or refrigerated medicine! Your solution sounds good to me!

[Happyexplorer in reply to Sharitone]

Hi Sharitone,There were afew comments on Trip Advisor from 3 years ago, which tend to support my plan.🤞🤞 will let you know how I get on!😊

[Sharitone]

Thanks, bon voyage!