Tocilizumab and travel

[Manihiki]

I am about to start this medication and wondered whether or how you take it with you to use when travelling overseas? I am in New Zealand and it is unfunded unfortunately for GCA but my rheumatologist thinks I should start on it after another debilitating round of this enemy disease. Tips on how you are doing on it and especially when travelling abroad please.

[DorsetLady PMRGCAuk volunteer]

Now you have asked you can see related posts - and this is a good start…

healthunlocked.com/pmrgcauk...

But would suggest you do check with your airline and as you are in NZ [having just arrived there I know they are stricter than some countries with medication] - you have to declare it when taking back home on the NZTD online form].

[Manihiki in reply to DorsetLady]

Thanks and yes I will read up. I guess I am looking for a miracle with going on to it but nothing else is working! $$$s do not beat quality of life. Enjoy New Zealand and hope you are here for a while.

[DorsetLady PMRGCAuk volunteer in reply to Manihiki]

I will thank you - and here for another 6 weeks… luckily…😊

[PMRpro Ambassador]

Do you really travel that much? How long are you away at a time?

Initially it was insisted that it must be kept cold at all times but the newer PIL allows it to be out of the fridge for up to 2 weeks I think at temps below 25C - the same travel equipment as used for insulin pens/syringes would work fine so a short trip isn't a problem. I was issued with a small coolbag and freezer packs which is fine for a day though no longer essential.

Different matter for being away for a month or more though and I found this company below when I was researching at the time - now I inject 2 weekly and have little intention of flying anywhere far!

This company probably has the most advanced options and provides comprehensive advice on flying with injectables:

4allfamily.com/blogs/travel...

Although the US tends to be very strict they are probably not the worst to navigate so TSA regs may not cover everything. I don't have personal experience of flying with syringes as I timed my injections around a trip to the UK and noone asks when you drive with it in the campervan fridge. As DL says - you probably need to check with the various airlines and what on-board facilities they can offer - fridge space, freezing coolpacks, mains or USB power and so on.

[PMRpro Ambassador in reply to PMRpro]

PS - not sure their info is uptodate for Actemra/tocilizumab but it errs on the side of caution which is fine.

4allfamily.de/en/collection...

expand "Can 4AllFamily’s Medical Coolers be used to transport RA Injections?"

[Ginntonic]

Hi, I have PMR, not GCA, and we travel a lot. (Please forgive the underlining but I can’t seem to stop it🙄

I calculate the Preds that I will need, multiply by about 50% (the advice on here is to take much more than you need) I then ask the surgery for that amount. I also ask for extra for when I return to avoid me having to rush to get more when I get back. Also ,be sure you have enough to get to the leaving date

I put them in a plastic ice cream carton or two or three. Always carry your medication in your hand luggage. Carrying drugs can arouse suspicion and you don’t want them opening up your main bags before getting on the plane without you knowing. Much easier to open up your rucksack as you got through security. I have had that happen to me ,any times and when they see it’s medication, no problem. It’s a good idea to take your prescription too for the same reason

I am lucky in that I am in UK with a good surgeryfor renewing medication

The only down side is doing the calculations as you are embroiled in dates, tablet numbers, tablet sizes, micrograms etc etc.

I hope this helps, sorry about the underlining, and have a good time away ( we don’t have hoIidays now, we call them living elsewhere.

PS we have rellies in Waitara and also near Kaitia

[PMRpro Ambassador in reply to Ginntonic]

You have caught the U ikon while posting - that starts underline, click/tap it again to stop. To remove, block the text you want to remove it from, and tap the U ikon.

[Ginntonic in reply to PMRpro]

Oh thank you, I tried the iPad controls to no avail. I should have noticed!

[SheffieldJane]

It has been a while but on flights to Australia from the UK, the Cabin Crew put it in the fridge for me. As for its efficacy, I got down from 40 mgs of Pred to 10 mgs in a few weeks. I needed to do a careful, slow taper under 10 mgs to get any lower. I am still struggling around 4.5mgs. The Endocrinologist is taking me in hand when I get back from Australia next year. He sees my Adrenal function as the barrier.

I declared Tocilizumab at security in a cool pack in my hand luggage. It didn’t seem to cause any issues.

I am left with gut pain and issues that may or may not be connected with use of the drug.

[Niblick]

In the UK the NHS will only pay for 12 months . Current cost is approx £250 per 162 mg injection. I have travelled from UK to Australia twice with stunted . I have a 30 hour cool box . Make sure you take a Doctors letter confirming that that box needs to stay between 2-8c and therefore shouldn’t be opened. The only place that they made a fuss ( twice ) was at Heathrow . No problem at transit in Doha or entering Australia. Make sure you declare on the entry form.

[Manihiki in reply to Niblick]

Thanks for your reply. So that is more than what we have to pay in New Zealand. It is going to cost me NZ$2000 a month so about one thousand pounds a month. It’s funded for rheumatoid arthritis and even long COVID but not GCA!

I am so grateful for all the helpful information on here.

[Niblick in reply to Manihiki]

On basis of a weekly injection it’s about the same price per month. NICE the NHS body that approves funded medication have a similar approach to that which you have described in N Zealand

[Manihiki in reply to Niblick]

Yes you are correct except we don’t even get the year! We are going to start badgering our government!

[Devoid in reply to Manihiki]

Hi I have an annual letter from the company that supply the Toc . I’ve always carried in cool bag with ice packs , always mentioned it at the security but no one has ever shown any interest. I think by saying you are carrying it , you are not trying to hide anything. I think some airlines like to be notified in advance

[Noni71]

I have travelled from the UK to other parts of Europe with Tocilizumab. I bought a small pouch like cool bag to carry it onboard. It shouldn’t go in the hold as it could freeze (so I was told) I felt really well whilst on this drug and have not had as much success with alternatives. Wish it was available ad infinitum in the UK!

[Devoid in reply to Noni71]

Hi just to say if you are unwell off it and well on Toc see if you can get your consultant to arrange a pet ct scan . Mine showed that the disease was still active and I have been back on Toc ever since.

[PMRpro Ambassador in reply to Noni71]

What makes me angry is that it IS available ad infinitum for inflammatory arthritis.