does anyone have any knowledge. We are travelling in Asia, moving hotels every couple of days. Currently in Cambodia. The rheumie team stocked me up with enough etanercept to last me until September (when we get back to uk), and I have one of those medical travel packs to keep them in. I move it all from hotel fridge to hotel fridge as we travel. It seems the latest hotel fridge has a dodgy setting. I woke up this morning to find them all frozen. And I am due to take this weeks dose today. Does anyone have any idea whether it’s ok to take a dose of thawed out etanercept, or has my entire batch due of 6 doses been ruined !!?? I know to check for cloudy liquid etc (its not cloudy, it’s just frozen).
Any knowledge asap gratefully received as I know it will take the rheumie team at least 2 days to get back to me. And I have no idea if it’s safe to take it today. thank you !
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oh wow, I am afraid I can’t help only to say that I have also travelled with a biologic some distances… Australia and back etc. I decided not to check the temp constantly and just hope for the best using my cold bags and hotel fridges. I didn’t want the stress if panicking It never froze though.
Could you get in touch with travel insurance and somehow get a referral to get the drug?
It’s a tricky situation and I would love to know how you resolve it as I travel a lot. Sorry no help at all but let us know how you why on
Just found this on line …sounds like you should try to get a replacement so do call your insurance company ….& check the enbrel website below.
I think the phone numbers below refer to the USA.
The info is…..
“Do not use Enbrel if it was frozen
Do not freeze or use the autoinjector if it has been frozen. For more information or help, contact your healthcare provider, visit enbrel.com or call 1-888-4ENBREL (1-888-436-2735).”
Several years ago I was on holiday and the fridge went to -1. I phoned my supplier and spoke to a pharmacist and was told not to use it, he also said it wouldn't harm me if I did but it wouldn't be as viable as it should be. I'm also on enbrel.
Fast forward to last year when touring Spain in our motorhome. Drugs kept cold during ferry crossing but in Spain couldn't get the fridge in the motorhome to go below 12 degrees, thought, well that's okay for 4 weeks. Woke up one morning and it was on 3...panic stations. I phoned sciencus up and eventually got to speak to a pharmacist. She contacted Pfizer and was told they'd been testing viability of the drug in different circumstances and it was still viable if it had been in and out of refrigeration up to 3 times and in temperatures up to 32 degrees. I know your circumstances are different than mine but do phone your supplier up and asked them to contact the manufacturer and ask if they are still viable.
thanks everyone, that was helpful. Yes, I had found the official advice of ‘do not freeze”. . I’m travelling at pace here through multiple countries, so based on how long it took to get additional doses of it in the uk before I went away, I don’t think I’ll be in one place long enough to get a top up of etanercept in the middle of cambodia by tomorrow night… i’m new to this biologic stuff - only started taking it 3-4 weeks before I went away. I decided to go by Paula C’s first paragraph above and just take it when room temperature, on the basis that “might work” every week until sep, must be better than throwing the whole lot away. I’ll let you if that was a bad decision (hopefully), in case it helps anyone else in the future.. I always knew it was going to be dodgy travelling through multiple countries in Asia over 6 weeks, not staying in any hotel more than 2 nights in a row and including overnights on trains and boats, and beach camps too, along with a 6 pack of etanercept ! The rheumie team gave me an emergency pack of prednisone too as back up if it all went pear shaped.
PS - in case I sound a bit blasé about it - I’m not sure I am a typical RA candidate. Rheumie thinks i am palindromic so anyone’s guess as to whether stopping taking it for a while would lead to a near term consequence … I’m sure if I had severe RA i’d be straight on the the phone to some-one as recommended by a couple of you above. No pain right now, so all good!
If it’s really that bad, get an ice cube to numb your skin first and always inject into your tummy. If you’re going into your thigh, it’s super painful. Tummy completely different.
I agree, I initially dud them in my thigh and they were super painful. I now use my tummy and it’s completely painless. I did get told to try the ice cubes which helped, and to use an antihistamine the day of, and day after injection, to deal with the red swellings;. I’ve never had them on my tummy though. Been on them 6.5yr now
I injected into my thigh as shown by the nurse It may sting a bit but not worse than that. I have heard people inject into their stomach I believe that a YouTube video is available
I’m struggling with these biologics to be honest. I was on imraldi 18 months ago, they taught me to inject into my stomach. But my injection site reactions were so bad they ended up telling me to stop in case of anaphylactic shock. 18 months later (no drugs in between, but as I say above, they think I may be palindromic) I am now trying etanercept and doing it in the thigh. I am still getting injection site reaction every week. Swelling. Hardness. Itching. Redness. I’d rather have that in thigh than in my tummy though. In my tummy, it felt like I was 4 months pregnant every time I injected and it lasted for at least a week. Same with the thigh almost (which isn’t great when you have to inject etanercept every week). And my skin is darkened for a week or so afterwards everywhere I inject. Which isn’t a great look in a swim suit. I am going to give it a bit more time to see if my body adjusts to the injections. If not I’ll have to stop taking these ones too. Have tried antihistamines but they don’t seem to make any difference. Funnily enough post mosquito bite treatment (which we are using a lot as we are moving through jungles) seems to be helping.
thank you. They told me I could take away 4 pens and not put them in the fridge at all (just keep them at room temp) but with 6 pens it all became more difficult, plus the fact that it’s nearly 40 degrees out here a lot of the time, so “uk room temp” is also difficult to achieve . I’ll be mindful of possible ineffectiveness and hope my body doesn’t do a flip on me. As long as taking dead biologics doesn’t hurt me …
if it helps I would do exactly the same as you, and while I don’t want to wish away your travels it’s three weeks ish until September when you are back to carry on. If it is ineffective then at least when you land in the Uk you can sort it. And if it still works amazing. As a person who travels a lot with RA I would love to know how you get on
Would you also mind sharing what cool pack you are using - I am looking at also going travelling for 6 months and I currently have a flask that lasts 36 hours at fridge temps … but would be intrigued to find out what others use
I’m using it again now, with the intention of refrigerating it at every opportunity and freezing down the gel packs. But I failed to consider the effective temperatures of the various hotel fridges. We have stayed in 8 different places over the last 14 days so far, through Vietnam and Cambodia, and the refrigeration is a challenge. And irritating.
Hi when I was on Etanercept I always travelled with a cool bag the hospital gave me ( this was 20 years ago) plus several ice packs. I still do this but with different medication now. While on Etanercept I went on a cruise & stupidly didn’t think that a drinks fridge on a ship was not the same temperature as a regular fridge. I was fine taking it but it stopped being effective after I got home & had to swap to Humira. I was also told not to take it out of a fridge more than once but maybe that’s changed. How are you managing to freeze the gel packs? Do you have a freezer? I know they say not to let the box touch the side of the fridge which I think is to stop it freezing. I really don’t know what to suggest. I think I would still try to contact your Rheumy team or ring your consultant’s secretary on Monday with an urgent message to pass on for advice. There’s a possibility it won’t do you any harm but may not be effective. I really don’t know. Could you manage on steroids till you get home? Poor you hope you get some more helpful answers x
Thanks …. Feel for you…. I normally breathe a little sigh of relief when I get it in to a hotel fridge. But never considered that they would be wrong. Will be sure to suss out a little more now! Good luck …
Yes, since being on enbrel and taking a fridge thermometer with us on holiday we have found that hotel fridges aren't as cold as domestic fridges. I also wonder in hotel rooms were you have to put your card key in a slot in order for the lights, plugs etc to work is the fridge on when the card isn't in it.
Thanks - we get around that by asking for 2 room keys and leaving one in the slot when we go out. To be honest, they is team told me not to bother putting it in the fridge at all - they said 4 pens would last at room temp for 4 weeks, without any fridge. My problem was the last 2 pens.
No sorry! This happened to me..the whole batch is ruined and has to be replaced..sorry. DO NOT USE..very dangerous. They replaced the batch for me no problem. The delivery company said it often happened. Good luck!
Which countries in Asia are you visiting? It sounds like an amazing trip. I`ve recently watched travel vlogs of a journalist travelling through Nepal and it looks amazing - I would love to go. Hope you have a nice time.
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