Tocilizumab and travel

[Ozzy]

i have been using a medical travel bag but it uses ice packs to keep the injections cold, when I went through Heathrow airport a couple of weeks ago I was stopped because of this. I have a letter from the hospital but I still had to get special permission to be allowed to keep them. They said that as the ice packs where still frozen solid I could keep them this once. Anybody know of anything else I can use which will keep tocilizumab cold enough or will I have to leave my injections at home or just no fly anymore.

[shazbat]

I got the disposable ice packs and a really good online insulated bag. I kept the packs in until I went through security. My injections were fine for the 3.20 minute flight. I don't know what the problem is about the ice packs. They specifically asked me this year.

Sharon

[Ozzy in reply to shazbat]

I was told that they are checked the same as any other liquid and are over the limit. My flight was to see my daughter who is working in China. I have tried to find another way to keep the tocilizumab cool enough but although I found packs for insulin they didn't keep my drugs at the temperature required.

[shazbat in reply to Ozzy]

Well Ozzy I was going to check this myself apparently providing they are for medication and the letter says they have to be temp controlled then they are accepted. I suggest you email the airports customer services advising them what happened and ask them to clarify. They should then train their people. Mine wanted to take my toch injections away to swab. Told him he wasn't taking them anywhere. He then took the letter from doctor to his boss. This is first year my injections been questioned. I think they have taken extra staff who don't know the rules. Perhaps we should also be asking the NRAS to be raising this with Airport authorities. I had 5 months injections he asked why I couldn't keep one for the flight and put others in the hold. I pointed out the regs to him and my letter advising him he should read it properly. Healthcare at home sent a really good letter. I have to say the Bupa letter is garbage in comparison.

I will contact NRAS asking them if they doing anything. If you want perhaps you could also ask them.

Sharon

[Ozzy in reply to shazbat]

Just looked at the rules at Heathrow and it states the unless your need medicine during flight it has to go into the hold luggage. If needs to be temperature controlled you have to contact your airline directly and get them to place your medicine in the correct area of the Hold. My next flight is with Ryanair, as it's only for a week I think I will skip my next injection as I do not fancy handing my injecton over to just anybody who may not put the same level of important as me.

[Ozzy]

Thanks for your reply. My letter was from my rhumy at addenbrooks hospital and I took the injections in original packaging with the leaflet which has instructions on storing injections. I also noticed the label on the box from the pharmacy has the temperature to keep them in. I had to show all of it and still had trouble with security. The bag I use was my nieces which she was given to keep her drugs in from the drug company so it's marked with medical stamp. I will try to find out more as to rules on flying as this must effect a lot of people.

[shazbat]

I was asked if I had not considered ice cubes. I just looked at the guy like he was a lunatic. I have emailed NRAS asking if anything is being done with the airports. I was also asked if I had considered epi pen for my diabetes until I pointed out I didn't have diabetes.

Sharon

[shazbat]

This is from Heathrow Airport web page.

You can only carry an ice-pack or liquid / gas cooling bag if you are carrying essential medication required during the flight and you can provide proof that the medication must be kept cool. Please see the restrictions on the carriage of liquid medicines for further details.If your medication is not required during the flight but needs to be temperature controlled you must make arrangements with your airline to store the medicines and cool bag in an appropriate area of the hold.

[PFKAAde]

Would small ice-packs (below 100ml) not get around this? I thought it was just the quantity of liquid in each separate container? May be wrong.

[Witsend8 in reply to PFKAAde]

Hospital said this, certainly think one person has limitation on liquid hence one small bag. Does this count towards it, seems rules like people interpretation differs. Ill call airline if no answer happens. Time getting shorter now and suffering anxiety worrying about this lengthened trip. I have asked rocjr as in previous posts but hospital who told me to call them, roche will only talk to medics! They now hsve to get round to call roche now. Wjy do these people complicate everything so much??

[AgedCrone]

Yes that should work...you can take 6x 100 ml bottles of cosmetic lotions can't you!

[Victoria-NRAS Partner Moderator NRAS]

Hi all

Thank you for raising this Ozzy, and thank you for emailing us and alerting us to the post Shazbat. We haven't been getting any helpline calls about this, so had not contacted airports/airlines etc. I have done some research on websites for some of the major UK airports. As Ozzy has said, Heathrow do state that:

"If your medication is not required during the flight but needs to be temperature controlled you must make arrangements with your airline to store the medicines and cool bag in an appropriate area of the hold."

None of the other sites I looked at went into this level of detail. They all seem to refer to only having medication in hand luggage that is 'essential' for the flight, but don't explain what happens when the medication has to be kept at a certain temperature.

My concern with the above quote from Heathrow is that I wonder whether all the airlines are actually set up to have an 'appropriate area of the hold' as our understanding had always been that the hold would be too cold for this medication. You would certainly want some reassurance on this before handing the medication over to someone to entrust this with. It is also not clear at what point you would give it to a member of staff and how qualified that person would be to make sure the medication was safe.

I can't tell whether the wording on these websites has always been that way or been changed/updated recently, but we will keep an ear out for other people having these problems, and I will see if there are organisations we can contact to get some clarity/reassurance. It might take a while to get responses on this, so please bare with me. I will update on here when I have anything, so that other people can see the thread.

We always recommend that as well as carrying a letter from your doctor, as an added precaution it is worthwhile contacting the airline you will be travelling with to make them aware that you will be taking medication with you which must be temperature controlled.

I notice that the Heathrow page doesn't say anything about 100ml allowance for the ice packs, just that they have to go in the hold. Can I just check Ozzy and Shazbat if you know what size yours were/whether they were over this amount, and how many ice packs you had for your medication?

Many thanks

Victoria

(NRAS Helpline)

[shazbat in reply to Victoria-NRAS]

Hi Victoria mine were the small silver ones you can buy for a pound. I'm sure they are not more than 100mls. I have never had a problem travelled with injections for 6 years I go through Manchester and it was only this year the guy had no idea what to do. In the past they read the letter. Even when Enbrel said you can't scan they were fine. However the tone this year changed because it was short flight I didn't have the packs. The lady who searched my luggage initially said good no ice packs. Then I was passed onto a guy and spent 15 minutes while he went through every box, took my letter to a manager then swabbed them. But they seemed to be concerned about the ice packs.

Shazbat

[Victoria-NRAS Partner Moderator NRAS]

Hi all

It seems the more I delve into this the less clear it becomes, and I am struggling to find definitive answers or places to go for definitive answers. Most airport sites refer to people only carrying medication needed during the flight, and putting the rest of the medication in the hold. The problem with this for biologics is that they need to be kept at a controlled temperature, and the hold is generally too cold.

Previously, a letter explaining the above has been sufficient. I am not sure if this has changed or if inexperienced/poorly trained staff have either been more rigid with guidelines than they used to be or haven't understood the guidelines.

A suggestion to contact the airline you will be travelling with in advance keeps coming up, so I think that would be the best thing to do. If possible, ask them to put any requirements for travelling with medication in writing (email or post) to you. If they tell you that you only need a letter from your doctor or the company who provide your medication, having this in writing would be helpful.

Here are some other suggestions from the research I have done today:

As you will have seen, the major issue with carrying liquids is having more than 100ml. If you are using ice packs, ensure that they meet this requirement.

You can buy special travel cases for traveling with medication that has to be kept at a certain temperature, for example: coolicebox.com/medical/insu... (I use this as an example because they specifically say that they can be used for biologics). However, it is worth contacting the company who provide your medication (e.g. Healthcare at Home or Bupa), as they may be able to provide you with a travel case. They may also have useful information about keeping your drug at temperature. For example, you may typically need to store it at 2-8 degrees, but it may be acceptable to allow it to go above this temperature, so long as it doesn't exceed 25 degrees. The exact temperatures and the number of times this can happen over a set period can vary, and guidance changes over time, so worth checking this.

If you are told your medication will need to be kept in the hold, ask for details about when it will be handed to a staff member, what their level of training/understanding of treating your medication will be, and confirmation of the temperature of the hold area and how this would be monitored.

I hope the above helps. Please let us know if any of you have continued problems with this.

Kind regards

Victoria

(NRAS Helpline)

[Ozzy in reply to Victoria-NRAS]

I am not sure what size my ice packs are as my son is using my bag to collect my next batch from the hospital. The bag I use is designed to keep injections at the ideal temperature between 2-8 degrees and was provided by a drug company. I have looked at insulin pouches but the temperature was not cool enough for tocilizumab. I have a letter from the hospital for travelling with also I kept the drugs in their packaging which has the temperature that it must be kept on it. I was eventually let through security after a manager was called but only because the ice packs were still frozen solid. I don't think they would let do it again. I don't know if gel packs would be the same.

[Pat9442]

Try using Frio bags which work by soaking a pouch filled with beads in cold water which then expand and stay cool for up to 48 hours. I use these for insulin when travelling and they are brilliant. When they get warm you simply soak again in cold water. I shall be using them for MTX injections on my trip to India in three weeks. Never had to have a letter. Insulin always travels with me and also a copy of my prescription

[Ozzy in reply to Pat9442]

I looked at these but tocilizumab has to be kept between 2-8 degrees.

[Peejay64]

Oh! No! Due to travel on Easyjet in 2 weeks time - need to take 2 Methotrexate and 2 Humira pens with me. Stupidly I assumed cool bag and ice packs for Humira pens and the MTX pens in my hand luggage with a Consultants letter, drug packaging and info. , a Hospital at Home letter and current prescription documentation to be sufficient evidence and preparation. Seems like 'trouble ahead' !!! I have just emailed their customer services - but a reply will not be forthcoming for 4-5 working days!!!!! It has now become such a worry - the last thing any of us need - bad enough keeping the disease under control with everyday stresses and strains!! Any advice - new news will be much appreciated and I will update on outcome ..... It's been bad enough finding away to keep the Humira between 2-8C for 12 hours fridge to fridge!!!!!

[Ozzy in reply to Peejay64]

It might just be Heathrow airport security. Can you ring customer services and look on airport website that your flying from. I had no problems with internal flights once I got to China .

[thelmar in reply to Peejay64]

Hi

If you have a look on the Easyjet website they have a telephone number for passengers requiring special assistance. I contact them each time I fly with them as I have a wheelchair at the airport. I have always found them to be extremely helpful. I know medication is a different problem but I certainly think they are worth a try. Good luck.

[Peejay64 in reply to thelmar]

Thank you thelmar - I will try that - I do want something in writing though to flash around at the airport and I guess they will need evidence (letters, prescriptions etc.) which I have added to my email - but a phone call certainly wouldn't go amiss!!!

[Witsend8 in reply to Peejay64]

Told to put injections in bag plus take boxes, im squashing mine, cool packs of some type) can't find small ones in shops yet! Picnic item i was told! So, still trying and waiting for hospital to call roche! May have to get loan go buy a temp controlled one, bills mean nothing spare. So, trying to be patient but anxious and seems like lloyde healthcare at home seem to be worst company as they don't supply one. Wish id known all this earlier, rven contemplating stopping but ot will be quite a few ill miss&consultant week 5/6!

NRAS i suggested to ROCHE they start a holiday loan system as not everyone can buy these or gets them delivered in one, my insulin pump manufacturer did this, was brill scheme. Can you get involved on this???

[Sanbanan]

I went through Edinburgh airport this year and had no problems taking injections on board and I had the small silver ice packs.

In fact security said that the liquid in the injections would not be included in the total allowance for fluids.

Glasgow airport the same last year.

It might be good if all airports/airlines could agree to work to the same rules.

[PFKAAde]

Another point with regards storing things in the hold - anyone ever got to their destination and been told their bag is in a different continent?

I always split my medication between hand luggage and hold luggage and take enough in each to last the entire holiday. It might be overkill, but I personally wouldn't fancy having to track down a supplier of biologics, for example, in some parts of the world.

Idk if it's partly the syringes that they are worried about, but I have never once had a problem with medication in my hand luggage.

There's always a first time I guess....

[shazbat]

Well it's 2017 and the situation has become more difficult. I flew from Manchester in June and it was a nightmare. I was in security for 50 minutes while my injections were taken out of the thermal bag and the boxes distributed between 3 trays. It was disgraceful the way they were thrown about. I was constantly told they were used to handling insulin. I offered the letter which they declined to read. They then spend 40 minutes discussing my small silver ice packs. After 40 minutes of being told twice they were taking the ice packs. They decided to go to a manager who said no problem. By then my injections had been manhandled. Out of the thermal bag for nearly an hour they then insisted I removed all 4 trays plus my case off the table because they were busy. I was helped by 2 men at the side of me. Then I realised 2 boxes were missing I found them in a tray pushed to the back of the room. I have complained since by email and they agree there were failures and advised me to get a lanyard as this has just been introduced to advise of my disability. I have looked at the boxes available they are either totally out the reach price wise by many of us. Or we are told to get an insulin carrier but the most they carry is 4 pens. I go for 3 - 4 months. My injections are weekly so that a minimum of 12 injections. For a carrier that size it's over £200. Information must be exchanged with the airports. They have no idea, even when I complained they answered that they were sorry my insulin had been treated in this manner. They had not even read or researched my medication. I was clear it was not insulin. I want to be independent I want to travel. However what is even more concerning I attended a market research workshop for RA last week in Manchester. The majority of patients in that room stated they leave their medication at home and hope they will not have a flare up. That is incredibly serious. Just because we want to be independent.

Shazbat

[Ozzy]

I do not take my injections with me anymore as I do not trust that they would be placed in the hold at the correct temperature as some airports say the have to travel that way. Another airline says that they can go as hand luggage but getting them through security is a nightmare. So I travel in the hope I don't get to bad and on for less than two weeks.

[Witsend8]

I waited about 3-4 months, usual for nhs to put all their chips onto the basket. Then had to wait via lloyds for injection training. I wouldnt recommemd lloyds at all, cant get through to organise delivery, they blame hospital, and vice versa, dont know who

[Whezziewhoozie]

Hi, I was in the same situation and basically it would have been about £20 - 40K year cost to my private health insurance for biologics and they would not cover me. If I increased my insurance premium it would be way too expensive so I had to deal with the NHS. They have been good and bad at points and it’s a process. But you do eventually get there.