My Medication Temperature Troubles

By James Hollens

4 min read

AS is certainly a condition full of challenges. Medications like the Enbrel that I take, are supposed to help, although sometimes they can bring a whole lot of challenges themselves.

Enbrel is a very high maintenance little thing. It requires to be kept at a constant temperature of between 2°C and 8°C (or 36°F and 46°F for my American friends who opt to use the old school system). Just like our AS affected bodies, if it gets too hot or too cold there can be big problems.

This is something that has hindered many of my travel plans but doesn’t usually cause any issues for me whilst being at home. It is a simple "stick in the fridge until it is time to inject" situation. Well at least this was the case until recently.

Too hot

I woke up one morning to see that I had two missed calls from a private number and a text from the company that delivers my Enbrel medication to say I had missed my medication delivery. I was a little confused as usually this is something I need to call up and arrange. I even checked my phone log to see if brain fog had deleted this memory, but I was correct. Nevertheless after calling them back I was able to rearrange a delivery for the following day.

When I collected my package of biologic goodies from the driver I could tell that the package felt a lot warmer than the cold plastic bag I was used to being handed.

It was a sunny day so I figured that maybe that could be the cause. But when I opened up the package, I could feel that all of the contents were most definitely room temperature.

The only explanation I could think of was that after failing to deliver these injections the day before, they did not get around to putting them back into the refrigerator

I got back on the phone to the company and was put through to a very rude pharmacist who did not believe what I was telling her. "If you REALLY think that’s the case then throw them out," she told me before promptly hanging up.

Too cold

I didn’t have the spoons to ring back and argue again so I took a deep breath and discarded these potentially dangerous injections. Luckily, I still had a couple injections left inside my fridge so I didn’t panic too much.

The next day I phoned them back to request a new delivery which they told me they would arrange for me as soon as they had the all-clear from my doctor. I hoped that by the time I had gone through all of my remaining injections, this issue would be resolved and I would have a fresh batch to use. However, another temperature related disaster occurred.

My fridge is by no means a state-of-the-art model. The top shelf serves as a mini freezer compartment and in the past I’d had a few issues with getting it closed. But usually after a bit of force it would give in and obey my demands to shut.

That weekend I had to travel to the other side of the country for a few days to attend my friend’s wedding. When I arrived home I opened up my fridge to grab a welcome home snack. My hunger soon vanished when I realized that the freezer door had come open whilst I had been away. It had been blasting in freezing air to the fridge area where I store my medication. There were bits of ice scattered around and everything felt noticeably colder than usual.

More phone calls

I found myself back on the phone to the deliver company once again to check what the implications of this might mean.

Luckily this time around I was put through to a much more friendly and understanding pharmacist. They advised me to discard these too as they had no idea what temperature they would have been exposed to or how long for. Worryingly, I was informed that they still had no confirmation from my doctor to schedule a replacement delivery. This meant that I was now left with nothing and my scheduled injection day was only a day away.

In the end I was forced to skip my injection day that week. This was extra frustrating as I had already missed the previous two weeks as I was on antibiotics for tonsillitis and after a long weekend traveling my body was really start to feel the pain and stiffness kicking in.

A week of back-and-forth phone calls to my doctor and delivery company followed. I finally got them to resolve these issues and send me a fresh batch of medication. It arrived a day after my regular injection day, but I was relieved to finally have my hands on some safe to use injections.

Going forward

To be honest it has given me trust issues about the fridge that I am keeping my medication in. I find myself frantically checking it at random points during the day to make sure that a repeat hasn’t happened.

I definitely need to replace the fridge but it is an expense that I can not afford at the moment – ironically because of my condition keeping me out of work for so long!

Luckily, I had the chance to defrost my freezer department before my new shipment of drugs arrived and so far I have not had any further issues with it.

Have you ever had any issues with keeping your medication at the right temperature?

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Lisa Marie Basile Moderator & Contributor
Thank you so much for this article, and all of the very specific tidbits it includes. I think it’s really important for people who are new to injection to read some thing like this. Because it can be such a confusing and all-consuming experience. 
1. James Hollens Moderator & Contributor
 <inline-mention username="Lisa Marie Basile" user-id="2108259"/> Thank you so much for your wonderful support as always! It really can be confusing at times and I am still working some things out all these years later! But I try to share what I learn along the way! Are you on injections yourself? Wishing you well, James (Community Member)
Julie Vallortigara Moderator & Contributor
Hi <inline-mention username="James Hollens" user-id="2107776"/> oh dear...what a rollercoaster of emotions you must have been through! Yes, I hear you, the storage of these drugs can be stressful. I was on Embrel as a fist biologics to try, and because of an allergic reaction to it I switched to Humira, which is less sensitive to temperature. So I guess I am a bit lucky with that! I hope you feel more in control with your fridge and your medication storage now 😉 Take care, Julie.
1. James Hollens Moderator & Contributor
 <inline-mention username="Julie Vallortigara" user-id="2107984"/> Oh that is very handy indeed! Definitely not something to aim at trying out but if anything was to not go to plan that would be very helpful indeed! I actually had a phone call with my medication delivery company today who mentioned that it is possible for my medication to be kept at room temperature for up to 3 weeks if it is kept out of direct sunlight. That shouldn't be too much of a difficult task living in London! Hope you are keeping well, James (Community Member)
2. Julie Vallortigara Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2107776"/> Hello, Ah that's interesting to know! So you can relax a bit in case you have a fridge issue again, or you can't store the medication at cold temperature for a little while. That's good to know when you are travelling as well, as even being prepared with cooling bag and ice packs, depending on where you are going it might be difficult to keep your medication at the same temperature 😉 oh well, we do learn things every day! Take care, Julie.
maisi Member
Yes. UPS delivers to my front porch but does not ring the doorbell or knock. And, the specialty pharmacy indicates that I will get a text the day of the delivery. NOT ONCE!! There was one time, the heat index was 105 degrees and by the time I got the medicine, all of the ice packs had melted, the paper was wet. There was no delivery time that I could find - which meant calling the pharmacy and inquiring! Now, I put a note out to the UPS delivery person that I want to sign for the medicine. <inline-mention username="James Hollens" user-id="2107776"/>.
1. maisi Member
 <inline-mention username="Rebecca C" user-id="2106882"/> I spoke with a customer assistance person at the local specialty pharmacy that uses UPS. I was told that they would require a signature, that someone would remind the driver and I put up a sign on my door. For that order, the UPS driver did require a signature. Then next time, the package was just left at the door. So, I just set reminders on my phone to check throughout the day. I am grateful for the quick service!
2. James Hollens Moderator & Contributor
 <inline-mention username="maisi" user-id="2108559"/> That's a good idea to have a word with the customer service about this. Did they think that this was just a one off situation then? Or have they started waiting for a signature since this? I'm glad that the service is quick though, hopefully it does not take too much of a search party to find it when they do leave it outside! Wishing you well, James (Community Member)