I was diagnosed with PV in August 2021 and was on Hydrea for about a year+, then switched to Besremi December 29, 2022, currently at 150 mcg. It's going well, but my HCT and Platelets are still trending up somewhat, have periodic venesections, last one in June. Hopefully time will continue to work in my favor, I don't have any serious side effects as of yet.
We were traveling for 2 weeks and I had one Besremi injection in our home refrigerator. When we got home the temperature in the refrigerator was in the low 50 F degree range while it is supposed to be kept between 36 and 46 degrees F (or 2 - 8 C). It was fine when we left, and we have no idea how long the refrigerator had been too warm. We have adjusted it and it seems to be working now, but it has frozen some things, so I don't trust it anymore.
I asked my specialty pharmacy for their opinion and they said not to use the dose but they didn't know what the specific requirements were for how long it could be at a somewhat higher temp. They recommended I call Pharma Essentia. After scrambling for a phone number (not easy), I got to the Drug Safety team and they couldn't answer the question but took a lot of information from me, and referred it to the Quality Team to get back in touch with me. They also recommended that I not use the dose until hearing back from the Quality Team. I have looked up other injectables and most of them say that the doses can be unrefrigerated for a fairly long period of time, but I could find nothing online about this for Besremi.
Question1: Does anyone have any further information on this temperature issue and the acceptable temperature ranges and timing?
Question2: Does anyone have a recommendation on a small, home, medical grade refrigerator I can buy so this NEVER happens again? Ideally portable, and must have battery back up and sound notification if the temperature is out of range. Plus fit at least 2 of the Besremi boxes.
Thanks for any light you can shed on this issue. I don't post a lot but I am an avid voyeur and have learned a huge amount. I love this forum!
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C_Anne_Orange
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I expect there is going to be a decidedly unclear answer to your question. A lot would depend on how long and how high the temperature got, which you have no way to know. I doubt anyone would know better than PharmaEssentia what the answer is.
You may want to check with your homeowner insurance to see if this would be covered if you end up out-of-pocket for replacing the Besremi.
I believe that you would have to check with a pharmacy supply company for medical grade refrigerators. I doubt that there would be a built-in battery backup. The battery backup would likely be a separate unit.
Thank you Hunter, always thoughtful & helpful responses. When we got home the temp was in the low 50’s but you’re right we don’t know how high or how long. The specialty pharmacy said it would be replaced so I am a very lucky person.
I will definitely report back once I hear from PharmaEssentia. Hopefully it will be a learning experience.
It has an internal battery that provides six hours of power, but I’m not sure that it automatically goes to the battery if power is disrupted. There’s a long technical document that is available on line to check out. It does have an app, which I believe allows you to check the temperature from wherever you are.
I have one of these and like it very much. It doesn’t hold two boxes though. I usually end up taking the syringes out of the boxes and put them in the fridge individually.
You can buy it on Amazon here in the US. It’s not cheap, for sure, but it has given me piece of mind. It’s a lot more stable than my fridge!
Thank you SO much for sending the link. It definitely looks like a possibility. I was hoping for something big enough to hold 2 boxes, but your solution sounds like it works, and is much less risk than keeping them in the boxes in an unreliable refrigerator. Plus the advantage of being able to travel with it which has been an issue for us this year as we try to make up for lack of travel during Covid. I will look into it. Thanks for your message! Very much appreciated!
Hi C_Anne, I bought this small medicine cooling unit for travel. I had it plugged in for 5 days to test it out, and it seems very stable, definitely tiny and quiet and sits on a countertop. I see no reason why it couldn’t be used all the time to refrigerate your medicine.
I bought it because even though I found multiple devices to keep meds temporarily “cool”while in transit, there was no guarantee that the destination hotel/house would have reliable refrigeration. With the cost of these medicines, I wanted to be sure I protected the supply for a 4-week trip. This little refrigeration unit gives me peace of mind. Good luck to you!
Thank you so much for your message and the link. I have looked at many of these and this one seems to have a little bigger refrigerated area. I will definitely look into it. I have spent a lot of time on Google and it's been hard to find good options. I really appreciate your message and the link. Thank you and good luck to you in your journeys!
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