I called the Levemir (aka Novo Nordisk) people yesterday morning about the bad insulin I have. I was asked what I type I was. I don’t know percentage facts, but I would guess most Type 1s don’t produce a lot of insulin. I was also asked if I tried a different box. My response was that I don’t have another box to try and it is too early to get a refill so it isn’t possible for me to get another box to try. I also told them that I first tried the pump and am now using Apidra every two hours.
They called my pharmacy to make sure I have an “active refill.” To me an active refill means that if I didn’t have refills left on that prescription, I wouldn’t be able to get a replacement box. If they are replacing it, I obviously had a prescription for that box, so that should be what is verified. I have doctors that call in stuff for 3 months at a time just to make sure you keep coming back every 3 months. That would mean only 2 out of 3 boxes of Levemir would be able to be replaced if it were bad. As it is, I do have refills left so I lucked out on that one.
She got back on the phone with me after talking to my pharmacy and said that I should get the replacement in 3-5 business days. She expects me to go 3-5 more days hearing an alarm clock go off every 2 hours to take insulin! Is she nuts? I asked her if she realized that this was insulin that I needed to stay alive. She told me that she did but she didn’t realize I needed it right away. At the beginning of the conversation, I told her I was Type 1 and I also told her I didn’t have any other boxes to try and it was too early to get a refill. I also told her I was taking Apidra every 2 hours. Not sure why she thought I wouldn’t need it right away, but I do.
After that little discussion, she called my pharmacy again to see if they could give me a box of pens today. Prior to her calling, I told her that I didn’t want from the same lot. She did verify that it was going to be from a different lot. My mother was able to go pick it up and drop it off for me late yesterday afternoon. I verified that the lots were different (I have learned the hard way not to trust anyone!). The bad box expired December, 2013 and the new box expires February, 2014.
My blood sugar did OK last night and I was 70 when I went to bed last night at 11. This morning, I woke up at 191. At 7, I took my normal dose of Levemir. At 8, I was down to 153 then I started going up again. I just want to cry! Why is it that I can reduce my normal Levemir dose by 25% to come up with an hourly rate for Apidra and that is keeping my blood sugar in decent control but the Levemir isn’t cutting it? I had to double my correction dose to get my BS into the 90s, where I am now.
Back in 2009, I had a couple bad boxes of Levemir. In the beginning, I wasn’t sure if it was the Levemir or me. I had to practically triple what I was using and was still running high. That was when I started having thyroid problems so I thought that was the cause. My PCP gave me a couple sample Levemir pens and I used one of the pens in the middle of the box of Levemir I had and literally landed on my butt with lows. When I went to use the Levemir I had from the pharmacy, then my BS went back up and I had to increase the Levemir again. After that happened, I started tracking lot numbers because I didn’t know if the previous boxes were from the same lot or not.
After yesterday’s phone call with the Levemir people, I really don’t want to call them again. I don’t want more insulin from the pharmacy in case it is a problem with how the distributor is handling them. Taking Apidra every 2 hours works great but I need to sleep at night. I can’t get to a store to buy NPH for two more days.
EDITED TO ADD: I called the Levemir people again. The guy I talked to today wasn’t going to make me wait 3-5 days and he will overnight it to my pharmacy. He said that they aren’t aware of any problems and right now it appears to be an isolated incident. I know that just because they aren’t aware of any problems doesn’t mean there aren’t any. I think we have all been down the pulling our hair out trying to figure out the problem road before. Since this box is coming directly from them and not thru a distributor, if it works, then I will know the problem was somewhere along the road. If it doesn’t work, that means my body is now rejecting Levemir and I will really cry. I did have a good laugh when he asked me if I have talked to my doctor about it!