Levemir Funny – NOT!

Levemir FlexPenI 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!
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8 thoughts on “Levemir Funny – NOT!

  1. I just started on Levemir this morning with 16 units & Humalog @ 6 units. Blood sugar at 2pm was 301. I don’t know how long you should use Levemir before you know that your body just won’t accept it. But I had tried Lantus about a year ago & that did not work for me. I stayed on Lantus for a week & it never brought down my blood sugar.I am supposed to take 16 more units of Levemir tonite & I know I will be up every 2 hours for a BS test. Will call doc tomorrow since she didn’t tell me how long to experiment with this insulin. Apparently these insulins just don’t work for me, but willing to try to have better glucose control.

    • Hi Lynn, they usually say to wait 48-72 hours in between changes so it might take you a day or two before seeing any results from it. You might need more than 16 units – everyone is different. Are you only taking fixed amounts of Humalog? The best way to take that is adjust it based on what you blood sugar is or how many carbs you are eating. I hope you get it figured out!

      • I remember that from taking Lantus, Kelly. Also remember not getting much sleep. lol. Too concerned about what’s going on while I’m sleeping. I do adjust the Humalog rather well I think, but switching insulins is a challenge. I’ll give it the full 3-4 days & see whether it starts to work. I really hope so. Have been having hi blood sugars in the morning for the past 6 mos. & everything I tried hasn’t worked. What works best for me is exercise during the day that seems to carry over thru the nite. But stress can kill those benefits if not careful, and I have had a lot of stress lately. Anyway, still glad to be trying Levemir. If It doesn’t work for me, at least I can say I tried.

      • Once you get it figured out, then you should be able to get some sleep. I wasn’t sure if you just took a fixed amount of Humalog – sorry that I read that wrong! Yes, switching insulin is a challenge – they are all different so you have to play to figure out what to change. I am sorry that you have been having a lot of stress – I know that messes up your BS really good. Been there, done that! You are right, at least you tried it. That is the only way that you know it will work. I will keep my fingers crossed for you! I do like Levemir a lot better than when I was on Lantus, but they all get on my nerves at times when there is a problem with it!

  2. When I had a Novolog vial that wasn’t working I spoke with the pharmacist who actually said, “Well, just take more.” He said my only recourse was to call Novolog. I didn’t.
    Taking more… I don’t think so.
    Threw it out but had another vial and that worked immediately.
    I get my insulin at the local drug store but everything else is a 3 month order from mail order.
    Some days are just way more frustrating than they should be.

    • You are right Colleen, some days are more frustrating than they should be! There are too many pieces to these blood sugar puzzles. I actually did try taking more Levemir with the first box but that didn’t work. There is only so much more you can take too.

  3. Oh Kelly – I am feeling for you here! I hope that getting the insulin directly from the manufacturer will be what you need. I still can’t believe that you had to tell them as a T1D – that you needed that insulin now – not 3-5 days later. One thing, with the stress, that doesn’t help our BG control (if only we all lived on Fantasy Island) – but if you have any other type of infection going on – that can cause your BG’s to go wacky. Or sometimes, like a few of us have talked about lately on some FB forums – it seems there is no explanation for the roller coaster ride of diabetes for us.

    Anyway, hoping to read better news from you – otherwise I’m going to be screaming along with you (and I think I won’t be the only one – your other readers will all be doing it as well).

    • I am hoping it works too Anna. I don’t know what I will do if it turns out I am rejecting it too. I think since the Apidra is working for me, that rules out some of the other causes that it could be with me. I know I sometimes have BS problems before getting sick and that is my first clue something is wrong. It has to be the Levemir since my BS came back to normal with the Apidra. It is a roller coaster ride for sure! I get mad when some people think you are doing something wrong if you have a problem when there was so many things that screw up BS that we have no control over. Depending on what time tomorrow I can get the insulin, I may not know for sure until Thurs morning. Cross your fingers for me!

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