I am a 41 year old male living in Hong Kong! After a standard body health check, I was initially diagnosed as having MF after a bone marrow biopsy done at a public hospital. But after a second opinion from a private specialist, I am now diagnosed with ET. Initially I was on free HU and Aspirin. Now I am paying for weekly doses of Pegasys.
What I'd like to get some input on, for those of you who may be on Pegasys, is regarding the storage temperature of your fridge. Now I know it is meant to be between 5-8 degrees C. However, when I first brought the pack of 6 injections home, I thought the my fridge would be somewhere between 5-8 C...given that I've been using the fridge for a few years without any issues. However, I checked a few days ago and it was around 11-12C! What made me recently get a fridge thermometer to check is because after my first injection, where I had flu symptoms and fever, my 2nd and 3rd injections were basically side effects free. So I called the nurse who in turn checked with the hospital doctor and dispensary. The advice was to not use the remaining 3 injections, and to go in and buy another 3.
Does anyone have any input on this, or know whether I really need to dispose of the remaining 3 injections?
Thanks in advance!
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dengor
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dengor - I don't know anything abour your drug Peg but would say if the reason you have to pay is private treatment get yourself referred back with an ET diagnosis if at all possible unless you can afford it and have more trust there, that's fine. And check your fridge thermometer as it may be unreliable as its a big shift for an o/wise steady functioning fridge unless you had never noticed its poor performance or there was a real spike in outside temps that day. . I would need much more convincing before I dumped those 3 injections. . . Cheers JR
I decided to follow the hospitals advice and bought replacement injections. But if these new ones don't cause me any side effects either, then my previous ones might actually be ok. I've now got 3 thermometers in the fridge to track the different temps on different shelves.
Hello Dengor, the advice in our booklet for storing Pegasys, pre-filled syringes, is: Storage temperature - room temperature. Storage time - suitable out of the fridge for a maximum of 21 days for one occurrence only. This is the advice for Pegasys, other brands of Interferon have different storage temperatures and times.
With regards to the flu-like symptoms with the first injection, this is common and doesn't mean that the Pegasys was at the incorrect temperature.
Hi Dengor, with regards to the information you have downloaded, and the information we have provided, what we are quoting is what is stated in the UK SPC. Effectively the interpretation is key here and the problem is how long your fridge has been out of temperature for. We thank you for asking for our advice. Maz
Update: I used one of the new syringes last week and I didn't get the side effects I did on the first one. So I guess there might not have been anything wrong with ones that were stored for 2 weeks around 12c. I'm relieved that I am not getting the serious side effects that can come with Peginterferon. But I do feel quite fatigued in the afternoons.
Hello, good to hear that you are not getting the side effects this time, but sorry that you are still feeling fatigued, hope that improves soon for you, it's not a nice feeling. Maz
Just wanted to give an update. I've now had 12 weekly injections of Pegasys 135grams plus aspirin daily. My platelet count has gone down from 13XX to 6XX now! Only side effect seems to be fatigue. Pegasys and aspirin continue...
The ideal storage temperature to store Pegasys is 4 degrees Celsius. The factory settings for a fridge are around 5 degrees Celsius but this is adjustable. There is a dial somewhere in your fridge (sometimes on the ceiling and hard to see) which you can use to adjust the temperature as desired. Remember that it takes up to 24 hours for the fridge to fully adjust to the new setting so don't measure again too soon. Try to position the thermometer as centrally as possible for accuracy. Digital thermometers are far more precise and superior.
The side effects you describe are typical of Pegasys and can improve with time. I hope some of this helps. Good luck adjusting to life with ET.
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