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Lantus

Discussion in 'Type 1 Diabetes' started by Fujifilm, Sep 19, 2009.

  1. Fujifilm

    Fujifilm · Well-Known Member

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    I have been on Lantus for at least ten years and over the last year I have felt, tired and how can I say .. not in the best of health. I am healty but just feel kack. My BG although never perfect has always been relativley stable if not a bit higher than it should be, but since having a really bad hypo a few months ago, I just can't seem to control my sugar levels, they always seem very high. I can take 20 Lantus at 10pm and my BG will be around 7 at 10am, have a banana for breakfast and 10 units of Humalog eat nothing all day and have a BG of 23 by 3pm !!

    The next day could be the same scenario but by 3pm my BG will be 4 which is what I would expect.

    After reading with interest many of the post's on the forum it seems the Lantus may well be the culprit. So I have decided to make an appointment at the diabetic clinic and see if I can get off the Lantus, also a friend of mine has dumped the Humalog (Lispro) and gone on to Apidra and finds this a lot better although she is on Lantus and complains of feeling tired and generally unwell similiar to myself.

    My lifestyle is such that I do not have a regimented routine which is not helpful.!

    Any thoughts on changing to Apidra and what to change the Lantus to.
     
  2. suzi

    suzi · Well-Known Member

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    Hi Fujifilm,
    I'm afraid i haven't all the answers your looking for, but i can suggest Levemir as an alternative to Lantus. My son changed to Levemir after a nightmare experience on Lantus, and for him the change has been good. You'll find quite a few members on the site who have also dumped the Lantus in favour of Levemir, hopefully they'l be along shortly, to give advise and encouragement.
    Best of luck,
    Suzi x
     
  3. LittleSue

    LittleSue Type 1 · Well-Known Member

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    I would echo the suggestion to try Levemir. Although I didn't have any side-effects with Lantus I have far better control with Levemir. You may need to take Levemir twice a day depending on your dose though, as smaller doses of Levemir don't act for as long as larger ones.

    Re your non-regular routine, DAFNE or something similar would cope with this easily. That means you don't have to eat at specific times or specific amounts of carbohydrate, you learn to adjust your insulin to suit your lifestyle, rather than the other way round. You just need to make sure you take your Lantus or Levemir at the same time each day, then inject Humalog or similar if/when you eat. No more having to eat when you don't feel hungry. Not all hospitals offer DAFNE but there are other similar programmes with other names, and an online version.
     
  4. Fujifilm

    Fujifilm · Well-Known Member

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    Thanks for that, I will look into levemir, also never heard of DAFNE but just read up on it and its available at my hospital !! so will be checking that out.

    I changed onto Humalog so that I could pretty much eat and inject when I wanted to, the problem I now have is that with it running high I have to inject to correct but wait four hours before taking any more, which usually takes me until I am due to eat, so if I am still high I need to take extra to adjust and my normal dose making life very complicated. My understandin is that Apidra is about two hours which would give me greater control and flexibility.
     
  5. janabelle

    janabelle · Well-Known Member

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    Hi Fujifilm
    That's a long time to have been on Lantus, didn't think it had been around that long. After 10 years I'd say you've got off lightly compared to other patients unfortunate to have been prescribed this garbage.
    Clinical trials of Lantus (Glargine) on type-1s were only done over a period of 28 weeks prior to licensing, and many people suffer horrific side effects after being on it for over a year. I suffered side-effects within months, and for the following 4 years, before discovering the relationship between my deteriorating health, fluctuating unpredictable BG control and Lantus.
    More and more people are coming out of the woodwork, and with any luck doctors and other health professionals will wake up to the problems associated with Lantus.
    Please don't forget to report any adverse reactions, poor BG included, to the MHRA Yellow Card Scheme at yellowcard.mhra.gov.uk

    Jus
     
  6. kewgirl

    kewgirl Type 1 · Well-Known Member

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    Hi Fujifilm,

    Sorry to hear you are experiencing problems with the GM synthetic analogue Lantus. You are certainly not alone and unfortunately there appears to be an increasing number of diabetics using Lantus that are experiencing significant problems with it.

    I would like to stress that as diabetics “we have a voice to make a choice” for trying insulin’s which help us achieve good glycaemic control and provide a good quality of life.

    Unfortunately what can sometimes happen is that diabetes care both Type 1 & 2 in the UK is protocol driven and thus diabetics are funneled down a one size fits all approach with regard to many aspects of their management including type of insulin.

    Whatever you choose to try it’s about maximising the benefit for you and as no two diabetics are the same everyone’s experience of using the long acting basal insulin’s will vary. As a very general rule of thumb it is recommended that you should try a new regime for 6 months and evaluate as you go along and if whatever insulin you opt for does not work for you then try another one. I feel that often diabetics are encouraged to stay on unsuitable insulin far too long rather than being given the option of trying another type of insulin.

    Long/intermediate acting insulin’s available in UK – September 2009

    Animal Insulin
    Hypurin Porcine Isophane
    Hypurin Bovine Isophane

    Human Synthetic Insulin
    Insulatard
    Humulin I
    Insuman Basal

    GM Synthetic Analogue
    Levemir
    Lantus

    I would encourage you to report the side effects you are experiencing on Lantus to the MHRA - this can be completed very easily online at http://www.yellowcard.gov.uk.

    I would also suggest you contact the IDDT – Insulin Dependent Diabetes Trust http://www.iddtinternational.org as they are very supportive and informative on the Lantus difficulties/changing insulin’s.

    Hope you get things sorted.

    Best wishes

    Txx
     
  7. Fujifilm

    Fujifilm · Well-Known Member

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    I just worked it out I actually started taking it 2003 so seven years, I was supposed to go on it earlier but went to live in Australia where they would not prescribe it. !

    When I came back I came off the "Humlin I" but not sure why I came off that and been on the Lantus ever since.

    Will report the problems on the links provided and will definatley get off the stuff.

    The more I read on the side effects and problems with Lantus the more I realise that some of the problems I have put down to age, general wear and tear may well be the Lantus.

    Given a choice what would be best the long acting animal insulin or the Levemir. I don't think the short acting animal will be any good for me due to the length of time it lasts.
     
  8. iHs

    iHs · Well-Known Member

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    Hi Fuji

    I know much is written on the web about using bolus/basal and being able to eat exactly when you feel like it, but in reality relying on basal insulin such as Lantus or Levemir to keep you stabilized for hours on end without eating is asking for problems. Lantus for sure does not really give a full 24hr coverage so that is why people who only want to inject it once a day find that they have to compensate for its lack of control by injecting larger bolus doses. I would take a guess that you only get about 15hrs cover from it hence the reason why you have to use 10units of Humalog for breakfast to cover a banana? Levemir is a bit better to use as its action is more gentle in its bg lowering effect but for best effect, needs to be injected twice a day. Whether you get on all ok by switching to Levemir or indeed by changing to another insulin as Kewgirl mentions, will again rest on you keeping your control together by eating more regularly. If because of your job, you are unable to do that, then think about pushing for an insulin pump. You will then only have to deal with one insulin to be your bolus and basal.

    You ask about switching from Humalog. When I first started to use MDI, I used Humalog with Lantus but asked to switch from Humalog because of hypos and feeling tired early evening (falling asleep for approx 2hrs every night). I stayed with Lantus but switched to Apidra and was much better hypo wise and less tired. Apidra's action is meant to be 'in and out' although its action on bg can last nearly as long as Humalog but is worth considering.

    Good luck on what you decide to do :)
     
  9. janabelle

    janabelle · Well-Known Member

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    HI Fujifilm, from my experience of a few long-acting insulins, I have to say Hypurin Porcine is far superior to any I've been on in 20 years. I was on a few different long-acting synthetic 'human' insulins and then the dreaded Lantus :evil: I've never tried Levemir, nor would I- its' as poorly tested as Lantus, and could potentially be just as damaging to people's health.
    What people must realise is that Lantus, Levemir, Apidra, Humalog, Novorapid,(have I missed any?), are not insulin at all. The reason why people report more stable control and better health on purified animal insulin, is because it IS insulin.
    We have no choice as type-1s to take medication,and all insulins (and non!) contain preservatives. Aside from preservatives what exactly is in analogue insulin?
    I look forward to the demise of Lantus, and I hope it's soon.
    i'm quite sure you'll feel better as soon as you get of Lantus, as I and many other people report. Keep us posted on how you get on.
    Best of luck
    Jus
     
  10. iHs

    iHs · Well-Known Member

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    Looking up the safety profile of Novo insulin, this is worth reading:
    http://www.novonordisk.co.uk/documents/ ... ofiles.asp
     
  11. janabelle

    janabelle · Well-Known Member

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    I stick by what I said. The safety and long-term implications of analogue insulins including Levemir is unknown. I became so chronically ill on Lantus in a relatively short period of time, so have many other people. There is a problem with it, and I don't mean the recent implied cancer link.
    If Novo Nordisk and Sanofi Aventis are so confident of the safety of their insulins, why does Sanofi Aventis state on their website that Lantus should only be prescribed in pregnancy where necessary.
    As for Levemir, I found this info:
    http://emc.medicines.org.uk/document.as ... #PREGNANCY

    Patients taking these insulins are unwitting participants in long-term safety studies. However results of these should not be based only on HBa1c results. When I was ill on Lantus, I continually reported my ailments and fluctuating control to my hospital Diabetic Clinic. I have recently discovered that they were not recorded in my notes. Also as my HBa1c was within the 'normal range' during this time,my notes stated that I had "good glycaemic control", despite my reporting to the consultant that I was having daily fluctuations between 2 -15! I have since made a formal complaint to the hospital involved, and my notes have been amended.

    Fujifilm, I forgot to say regarding Hypurin Porcine Isophane, that many people split the dose to ensure a 24 hour action. I take 22 units am and 12 units pm.
    Jus
     
  12. Fujifilm

    Fujifilm · Well-Known Member

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    Thanks for the replys, have now made an appointment at my diabetes clinic for Wednesday.

    I tried splitting my Lantus in two and that has made a difference with BG but now I feel kack all day :lol: so I know it does affect me.

    Will let you know what happens, also going to ask about the DAFNE course.
     
  13. janabelle

    janabelle · Well-Known Member

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    Hi Fujifilm
    Be wary when asking bout the DAFNE course. It's been said on this forum that only patients on Analogue Insulins are offered places :evil: It may give your doctor an excuse for not changing your medication.
    Been on the phone to yet another aggrieved Lantus 'ginuea pig' this afternoon, also due to see doc this week. You are not alone! It is becoming increasingly evident that feeling 'kak' and being on Lantus go hand in hand.
    Jus
     
  14. Fujifilm

    Fujifilm · Well-Known Member

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    Had my appointment with Diabetic centre today and did not really get anywhere! because my last HBa1c was 8% and higher than my last one, I was told this is the reason for me not feeling well etc. etc. Even though I have felt like this for sometime.

    I asked about Animal Insulin and was told that they had not prescribed it for 14 years but if I really wanted to go on it then I have to see the specialist in January in the mean time been changed to Levemir to see how I get on with that. I guess a change is as good as a rest. :)

    I also asked about going onto Apidra and was told its not one of the insulins they prescribe. :?

    Asked about low carb diet and was told I was better off sticking to what I do now but make an appointment to see dietician.

    All in all I probably should have stayed in bed :)
     
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