My Medication Temperature Troubles

Ankylosing spondylitis is certainly a condition full of challenges. Medications like Enbrel, which 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. The challenge is that the medication requires being 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 while being at home. It is as simple as sticking it in the fridge until it is time to inject. Well, at least this was the case until recently.

Failure to deliver

One morning, I woke up 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. Usually, I need to call and arrange the delivery, so I was confused. I even checked my phone log to see if my 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 caused it. 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.

I had back-up medication

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 of injections left inside my fridge, so I didn’t panic too much.

The next day, I phoned them back to request a new delivery. They told me they would arrange it 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.

Iced out

My fridge is by no means a state-of-the-art model. The top shelf serves as a mini freezer compartment. 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 medication challenges

I found myself back on the phone to the delivery 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—I had already missed the previous two weeks because I was on antibiotics for tonsillitis. After a long weekend traveling, my body was really starting 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 injections that were safe to use.

Going forward

To be honest, this 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, it's because my condition has kept me out of work for so long!

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

Have you ever had any challenges with keeping your ankylosing spondylitis medication at the right temperature?