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LANTUS USERS - PROBLEMS

Discussion in 'Insulin' started by janabelle, May 20, 2008.

  1. janabelle

    janabelle · Well-Known Member

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    I am sick to the back teeth of the unpredictability of my blood sugar levels. I have blamed it on my hormones and "time of the month" for so long. I have had tests for this and that. But now the high and low days do not relate to anything in particular and I have come to the conclusion that it is the fault of the Lantus I have been taking for 3 years. When I think back, most of the problems I have had with my health started after my diabetes nurse changed me to Lantus from my Insulatard. It began with stomach problems, belching, symptoms of an ulcer my doc thought. Ihad pains in my arms and joints, and was told I had fibromyalgia, although i took that with a pinch of salt! I have felt generally unwell some days for no reason. My blood sugar varies so much from day to day, despite taking the same dose of lantus and eating the same things. i have what I call "hypo days" quite often when I find it hard to keep my blood sugars to a normal safe level throughout those days. Other days the lantus doesn't seem to work at all! I have read a lot of info about these new GM insulins on the IDDT website, and have made an appt with my consultant to get off the stuff. I've been on human insulin for 19 years since diagnosis in my late teens,and I would like to give purified animal insulins a try. would love to hear from members who are on animal insulin, and hear your experiences of it. Also has anyone experienced similar probs with lantus?
    I just want to feel well again and have a better quality of life, I feel there may be hope for me on a different insulin.
    Justine :)
     
  2. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya justine,
    im on lantus and im thinking it could be that,take a look at my thread from this morning asking 4 advice,im sick to the teeth of how i feel,my dr is very stubborn and just says your doing fine and i am not doing fine at all
    amanda
     
  3. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Thanks Sarah & Amanda,
    Sarah I'll try that tactic! I'm sure you're right, and I read somewhere animal insulin is cheaper than alternatives anyway, how can they say no!
    Amanda, you sound as fed up as me, It's just one big rollercoater every day, and it's physically and emotionally draining. I,like you,feel exhausted and despair when I have continual unexplained highs and lows. But you are only 18 and you should be enjoying life and not suffering like this. I spoke to someone at the IDDT last week, (phone no. on web--site), they were very helpful, and made me take stock and make the decision I have made about completely changing insulins. You really should be seeing a hospital consultant if you aren't already, it is your right. I know it's hard to be pushy and fight for these things, when your worn out battling your diabetes everyday, but if you go armed with as much info as you can,(print info off the net) your GP will hopefully realise he's out of his depth, and refer you to a Diabetes Specialist. He can be as stubborn as he likes, but he'll have to give you a very good reason not to refer you. Can you take someone with you for support?
    Justine :)
     
  4. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya,
    i wish i was 18 lol im 36 tmorrow,when 1st diagnosed i was seeing a consultant but then care was given to my gp and diabetic nurse,blood was 8.2 at dinner so i thought great its gone up then an hypo at 3.45pm,ive just woke up i am sooo tired and ruddy fed up so dont worry i know just how u feel hun
    take care
    amanda
     
  5. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Oops, sorry bout the age mistake! I'm a couple of years older than you, but in the 19 years I've been afflicted with this, I have never really felt well. I'm preparing myself for a battle on Thurs when I see my doc to get the animal insulin. Read so many accounts of people on human insulin feeling like I do-brain dead, lethargic, forgetful, difficulty concentraing, that's enough to convice me to change. Had another **** day, like you, BS high,going to make my kids beds,be hypo after that I bet!
    All best
    Justine
     
  6. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    let me know how u get on with the dr and good luck
    amanda
     
  7. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Thanks Amanda.
    To Sarah, you said in your message that you know of other people having similar probs like me with lantus "and a lot more besides"- can you tell me what these other side-effects were please? :) Sounds like the animal insulin certainly works for you, with no complications after 43 years. Well done to you and long may it continue!
    Justine
     
  8. pixie

    pixie · Active Member

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    Re: Lantus problems

    i was on Lantus for two years, but then i was changed back to Insulatard last year as i am trying to get pregnant and my Pre-Conception Nurse says that you can't take Lantus while pregnant.
    i never noticed any side effects and i found that it controlled my sugars better. i was a bit disappointed to be put back on insulatard after 2 yrs on lantus, but i'm finding it okay so far.
     
  9. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Very funny :D , never mind a tired perm, I could prob blame Lantus for my grey hairs!
    Just this minute found out that someone I know who was also on Lantus, took himself off it because he felt it was making him ill, tired and depressed. It's a relief to know I'm not alone with this, thanks for info Sarah. Has anyone out there suffered gastric/stomach problems while on Lantus?
    Welcome to forum Pixie. :)
    Justine
     
  10. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya justine,
    yet another baddish day lol and my birthday too,while on lantus,i have highs and lows,the one tday was 2.1 n took an hr b4 going to higher than 3,i am always tired i could sleep all day,most days i ache especially me knees and spine, i feel awfully ill a lot of the time ,ive had awfull stomach pains which my dr thought was gall stones and wasnt,i have severe constipation which i have to take many remedies for,i get indigestion often ,on the good side ive lost over 3 stone which i put on with novomix,my dr doesnt know whether these are related to lantus or a coincedence,
    hope your ok,
    amanda
     
  11. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Hi Amanda, sorry you didnt have a very happy birthday. I had an ultrasound for suspected gallstones in January-surprise surprise it was negative, as are all the tests I've had for the various symptoms. I've been in taken to hosp twice, last sept and the nov bfore with suspected heart attacks, which turned out to b stomach prob. Always in pain through me.
    Has your GP suggested your probs are down to depression yet? That's the quacks' answer to everything. Very depressing!! But seriously I'd challenge anyone not to feel depressed and angry with docs with wot we have to tolerate day to day.
    Got all my paperwork ready for my visit to the hosp 2morrow, dreading it and looking forward to it. Don't know how I'll keep myself together if doc doesn't help me. My husband can't come with me, so gonna take my sister, she's seen me at my worst! I'll post tomorrow and let u know how I get on. Are u going to see your doc about a referral? You're a long way from me in London, otherwise I'd gladly fight your corner. HAPPY BIRTHDAY. :wink:
    Justine :)
     
  12. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya justine,thanks ,
    im phoning my dr tomorrow as to be honest i am actually getting really down ,im havin hypos for no reason,and highs same as you,i know wat my gp will say tho,he will lower the lantus ,then it will go high,then i will lower it again and start all over again lol,let me know how u get on with your dr
    take care,
    amanda :wink:
     
  13. Leosrme

    Leosrme · Member

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    Re: Lantus problems

    :D I have been on lantus for about three years now. I went on to it because of problems with having unpredictable blood sugars and hypos in the night. My GP said that it was likely to help.
    I admit that it has helped. Before Lantus, my HB1 was around 11 and the most recent was 6. I also take Novorapid insulin during the day. I am on small doses of insulin and always have been - I take between 3-4 units at breakfast, 4-6 at lunchtime and between 6 - 9 at evening dinner. I take 9 units Lantus at night.

    However, my blood sugar does go up and down without warning and has always done so. I understand that this is called Brittle Diabetes. It could maybe be 13 and I take 5 units of Novorapid and within a couple of hours, its down to 3. Other times its different. Generally though, since the Lantus, it has been better.

    However I have had funny spells where it seems that the Lantus isn't working at all. Its happened twice. Once a couple of years ago. I just couldn't get my blood sugar down at all. I upped my lantus and it didn't make any difference. This lasted about a week and then it suddenly all went back to normal. The second time was around 6 months ago. This went on for four weeks. Didn't matter how much insulin I gave myself, my blood sugars were really running high. I thought first it was the novopen/pens gone wrong. Then I thought it was dicky needles, then I wondered if the insulin was off. However, after 4 weeks, it suddenly went back to normal. My GP could not explain it at all.

    I do suffer from painful joints, fibromyalgia, exhaustion, generally feeling unwell. However, I attribute this to another illness that I have so I have never thought about whether the insulin could cause it. I have had these feelings for many many years, before Lantus, and novorapid.

    I have never heard of these kind of side effects, though know that when Human Insulin came on the market there were lots of problems with people not having hypo warnings etc.

    I am lucky in that even though I have had diabetes since 14 and I am 52 now, I have always had good hypo warnings. The only time I didn't was just after I started the Lantus. My vision suddenly went really weird - flashing lights and black spots and I felt peculiar. I tested my blood and it was 2. It was very frightening. After that, the normal hypo signs came back.

    I think I am going to investigate the side effects of various insulins and find out whether maybe not all of my other problems are associated with the other illness that I have.
    Bren
     
  14. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya bren,
    the point is every medication has some sort of side effects so its just trying to find an happy medium i guess
    take care ,amanda
     
  15. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Bren
    Interesting reading bout your illnesses, maybe human insulin just doesn't suit you. I'm blaming all my recent troubles on lantus, but my blood sugars have always been up and down on human insulin, which is all I have ever been on. I was told some people are just like this, but I was never offered animal insulin as an alternative and never considered it. The unpredictability of the Lantus is something I can no longer tolerate- it's too dangerous, and making my life a misery. I have only put 2 & 2 together and realised that all my other ailments only started after going on Lantus! I will post my experience of coming of lantus, and going on to animal insulin, if I get it! I guess only time will tell if my stomach pains, and other aches and pains and sypmtoms disappear- I am hopeful, reading other people experiences, that my quality of life will improve. I must point out that after erratic control for 19 years I have none of the usual diabetic complicatons, and my HBA1C results have generally been ok, leading the HPs to presume I am ok! Some days my BS can be as high as 18 and as low as 2.3. Not a great way to live.
    Will keep u posted. Take care
    Justine
     
  16. sophie

    sophie · Newbie

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    Re: Lantus problems

    Hi everyone,
    I'm new to the site and can't believe how many other people are having problems with their insulin on lantus. I've been on it for two years now and can't get ny consistency with it. My legs re so lumpy and I went to th doctors the othr day and he said there was nothing wrong. He's not the one who has to put up with the feeling like **** all the time and now after reading this, I'm going to change my insulin. I've been diabetic for 17 years and never felt so depressed and down with it as I do now. it helps me to know that other people feel the same way and I'm not alone. I have been discharged from this doctor and now waiting for an appointment for my gp, however long that wiil take! x
     
  17. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya sophie,
    welcome ,its a great site ,ive only been ere a few days and find it brilliant as i certainly dont feel alone now,i didnt know any other diabetics before here that i could get advice from.
    take care
    amanda :wink:
     
  18. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    He everyone, big success at the diabetic clinic today- the doctor has granted my wish to change to animal insulin and prescribed me Hypurin Porcine Insulins! I am still buzzing, I could have kissed him! thought it would be a battle. The only thing is he really wasn't sure about dosage, and he's put me on 30 units of Isophane, and 2 units of Neutral before meals, does anyone know if that sounds about right? I will start on it tomorrow, and report any improvements to my health. Good riddance Lantus!! :evil:
    Welcome 2 the forum Sophie. Of course u should change ur doctor,the guy's dangerous. What a hideous creature to say such stupid and cruel things to you, he's a complete arse-you should report him. I have been insulin dependent since I was 19,and I've had 3 children, my diabetes was much more stable and easy to control during pregnancy. I had been on insulin for nearly 3 years when my youngest was born and never that well controlled. You do need to get ur diabetes more stable before you get pregnant, and you will need to come off Lantus as it is not recommended in pregnancy. I hope you have a better experience with your new doctor. You may be pleasantly surprised like I was today!
    Chin up girl!
    Justine
     
  19. janabelle

    janabelle · Well-Known Member

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    Re: Lantus problems

    Thanks Sarah, glad there's an expert on animal insulins on the forum, I feel out of my depth. The doc I saw has never treated anyone on animal insulin, I was surprised-before his time he said. I was on 34 units of Lantus, but the nurse said people can be sensitive to animal insulins, so I should be careful, I may start on a lower dose, because there's prob gonna b still lantus in my system for couple of days i suspect. Excited and nervous, I feel like a newbie again!. I do expect to feel a whole lot better, even if my control is a bit erratic for a while, caertainly coudn't feel much any worse than I've felt in last 3 yrs! Thanks for your support-this forum has been a godsend.
    Justine
     
  20. totsy

    totsy Type 1 · Well-Known Member

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    Re: Lantus problems

    hya justine,
    im so happy for you,yayyyyyyyyyyyyy :lol:
    i too have been to see a different dr ,he wasnt surprised how ill i feel what with 16 hypos in less than a week and 2 more today,hes taken me off the metformin(like me he didnt know why i was on it) and lowered my insulin down by 6 units,hes going to phone me on weds as my bloods will prob be too high and we are going to start all over again and maybe add new insulins,i too feel like a newbie lol so me and u will both be trying out our new dosage together lol,im just glad we are at least trying new ideas and going to get somewhere this time
    good luck,
    amanda :p
     
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