LANTUS USERS - PROBLEMS

[janabelle]

Re: Lantus problems

That is fantastic news Amanda, well chuffed for you! It's quite scary aint it? The doc asked me if I had hypos today, I thought what a funny question to ask a diabetic. Perhaps we both have been having too many, although with tight control I suppose some are unavoidable.
Yippee to us.
Justine

 

[Sweet3x]

Re: Lantus problems

hey all

I'm so relieved that I found this thread. I've been having severe problems controlling my sugar levels, for the past 5 or 6 years, roughly since I was put onto Lantus. I moved to France nearly 4 years ago, and I'd assumed it was something to do with a change of diet. But reading this, I may have found out the real reason.

Thank you! I've been pushing to get put onto a pump for some time, now, but they don't seem to have them over here. Or at least, they don't want to give them to non-French peeps. I was considering moving back to the UK, but this has just made my mind up for me. I think a permanent move back to the UK is called for.

 

[totsy]

Re: Lantus problems

hya sweet,
welcome :wink:
amanda

 

[janabelle]

Re: Lantus problems

Hi Welcome to forum, I'm glad ur finding it helpful. I only know one other IDD, he's also come off "L" due to ill health. It's gr8 to read so many peoples different experiences, and having support-been huge help to me this past week. There was a time when I could take being diabetic in my stride, and it didn't stop me having a life. Since being on "L" I realise I had become despairing-my diabetes nurse told me it was an insulin with a flat profile, it minicked almost identically "normal" peoples' insulin. As a result I presumed the problems I was having with control, the fluctuations, unpredictability of BS from day to day, meant something must be wrong with me. I'm 2 days off it now, my control is stable, and I'm still adjusting doses gradually. I feel in control again. My doctor did suggest the pump option to me, but I didn't fancy being attached to a machine, from what i hear they are a good option. Hopefully u shouldn't have too much trouble getting one in uk.
Justine

 

[latecomer]

Re: Lantus problems

I have been 5 days on Hypurin Porcine Isophane and I no longer wake up feeling poisoned or so tired. Anyone on lantus and not happy, CHANGE you will still be giving yourself Insulin. I was so nervous but it was fine and it did not sting as a bonus, if however It is not for you than you can always change back. I have found that in the end you are the one who knows best and there is a lot of support out there from others who have been there. TAKE CONTROL OF YOUR LIFE.

 

[latecomer]

Re: Lantus problems

P.S. don't forget to shake it. I did and it don' it work so well. :?

 

[kewgirl]

Re: Lantus problems

Hi to all former Lantus Users and Those Still Suffering,

Thank you Latecomer for resurrecting this thread.

I would like to start by saying you/we/us/I are not alone - Lantus does undoubtedly, indisputably & without question cause debilitating side effects and/or difficulties with glycaemic control for a percentage of the diabetic community using it.
There are also a considerable number of users of Lantus who experience no problems.

If I knew the reason why some users experience such problems with Lantus I would be a very clever person :lol: :lol: - is it due to the “syntheticness” of the analogue, its composition, its aggressive nature, the fact its made from deactivated E-coli – who knows. :?: :?:

In theory and on paper the GM synthetic analogues Lantus & Levemir look fantastic – the idea that their profile mimics functioning pancreas / beta cells by providing basal (background) insulin is laudable. However I think that in reality this is often too far removed from what is actually happening when children, young people & adults use it. On the subject of children why when Lantus has not been licensed for use in the under 6’s is it being prescribed? :shock: :shock:
The alleged flat profile is sometimes too flat and insulin’s that have a predicable peaking effect can actually be very beneficial.

At a focus group I attended some weeks ago one of the diabetes teams stated “ we have done a great disservice to many diabetics by placing them on analogues before their effectiveness had been properly evaluated.” I felt vindicated!

I feel as do many others that we have in actual fact been guinea pigs :shock: :shock: during the time we have all been using Lantus.

The Department of Health have reacted in the same way they did when, the problems users who went onto Human Synthetic Insulin’s experienced and have completely denied there any are problems with Lantus. It actually makes little difference if out of 1000 users of Lantus, 999 are ok – for that one person affected by debilitating side effects their lives become a living hell. :cry:
I certainly stated to my doctor on more than one occasion I felt as if I was just existing purely because my heart & brain were functioning (of sorts!) but I was not living.

Chronic fatigue, huge weight gain due to water retention, muscle pain, memory difficulties, feeling like I was walking around with a gold fish bowl over my head, mobility difficulties, feeling poisoned – how many times did I mention to family members I felt as if there was something toxic inside me (and no I was not referring to the film Aliens!) loss of hypoglycaemia symptoms and crashing hypos despite good HBA1C results.

Having been diagnosed with Chronic Fatigue Syndrome, Fibromalygia & finally Multiple Sclerosis in addition to being informed it was probably “all in my head” – now dear pop a Prozac and you will feel better in the morning!! I am not knocking antidepressants – they too are life saving drugs but of reduced help if you are taking a synthetic insulin day in day out that is actually poisoning you.

However 13 weeks, 4 days and 15 hours since coming off Lantus (and no I am not counting :lol: :lol: :lol: ) I feel like a new woman and no longer want to throw myself off a bridge at high tide in despair and agony but wanting to stand on that same bridge and shout for joy.
I am on a possibly perceived as “quirky regime” of Porcine Neutral, Porcine Isophane & Bovine Lente Insulin but it works for me and as I continue on my road to recovery I hope I can carry on to resurrect my ruined career, financial status and life.

Don’t suffer in silence. If you feel “cack” on Lantus – try another type of insulin be it animal insulin, human synthetic insulin or the other GM synthetic analogue Levemir. As latecomer eloquently put CHANGE INSULIN & TAKE CONTROL OF YOUR LIFE.

The Insulin Dependent Diabetes Trust (IDDT) are a valuable resource for help on insulin related issues http://www.iddtinternational.org/

If you change insulin due to side effects and/or poor glycaemic control please complete a yellow card side effects form for the MHRA http://yellowcard.mhra.gov.uk/

Apologies for the long posting & the rant!

Best wishes

Txx

 

[janabelle]

Re: Lantus problems

Kewgirl,
No apology required, you've done this forum a huge service with that post.
There are many of us who have suffered "Lantus/Glargine Syndrome" -a colllection of symptoms, so a syndrome it is.
It's disturbing and extremely upsetting to hear more and more people suffering from it; and it's of huge importance that patients are made aware of the existance of it, so well done!
Jus x

 

[ham79]

Re: Lantus problems

been on lantus since diagnosis 10 weeks ago. my arms are sore my stomach is untouchable, bloated and constipated. my legs are in agony and feet are frozen but according to the quack it's viral "take pain killers and wait" after seeing everything said about lantus I have my doubts.

 

[nannybarbara]

Re: Lantus problems

Hi,

I'm referring to post from May this year regarding a comment about gastric upsets. I'm a T2, and although I have been diabetic for 30 years, previously diet, then gliclazide, I've only been on Lantus and Humalog since begining of June, and as my dose increased, I have more and more severe gastic distubances culminating in a flexible sigmoidoscopy in October (negative). My husband has always maintained that my gut problems are something to do with insulin, and from reading these posts, I am beginning to agree with him that maybe Lantus is behind it all. My problems have almost made me housebound in the morning. I had to cancel morning hairdressing and leg wax appointments twice in the past few weeks. I've also noticed that if I eat ANYTHING within 2 hours of my Lantus jab, I'll be literally running to the loo! (Sorry if that's too much information!)

From reading these posts, I'm going to ask the DN to change me to Levemir first, and then maybe an animal insulin if that doesn't make a difference. Being completely ignorant of various insulins, I don't know if animal insulin works as a basal/bolus, but I think I need to ask serious questions.

Thank you for your advice - it will be much appreciated.
Barb

 

[tigger]

Re: Lantus problems

Hi

I just thought I'd add to this thread as a long term user of animal insulin. I have had type 1 for nearly 27 years (diagnosed when 3) and around 1986 I was switched to the new amazing human insulin (monotard and actrapid - equivalent of insulatard etc). Needless to say after a year I had lost all hypo symptoms and was having comas. After consultation with my new hospital (old one claimed there was no problem) my new doctor said that the best thing to do would be to switch back to animal insulin. My symptoms came back and I still have them now despite claims that everyone loses them after 20 years.

Given my bad experience my parents had done quite a bit of research into others similarly affected. It turned out that about 33% of users had similar reactions to me. Some people had died and did try suing novo nordisk but could not make a case on the grounds that user error i.e. people's level of control had caused the hypos. In addition, when moving to human insulin we had to battle the assumptions of many medical professionals that because it was new it was better than the tried and tested alternative. This experience left me with a deep distrust of any medicine not used for a number of years and claimed as a great advance just because the drugs companies get more money. I have never tried lantus and have no intentions of doing so.

Animal insulin works in the same way as the older human insulins with a long acting and shorting acting types and pre-mixed. I do not know how it works in pumps as I've never fancied having one.

I'm happy to answer any questions on this and would recommend IDDT as a great source of information. Their mission is to make available the drugs that work for you. Remember you are the experts not the doctors as you live with the condition 24/7 where at most they will see you once every 3/6/12 months.

 

[janabelle]

Re: Lantus problems

Hi Tigger,
It was really lovely to read your post, and great to hear how well you're doing! I wonder how many long-term animal insulin users like you, there are left? Wouldn't it be interesting if a study were done comparing diabetes control and quality of life in these patients and patients on analogue insulins? Can't see any drug company sponsoring that research-sad :cry:
Agree IDDT wonderful, don't know where I'd be without them
Just read that Nanny Barbara is doing well since changing to animal insulin, and noticing improvements after just 2 weeks! Great news So many people come on this forum with the same probs on the same insulin, I wish this thread was permanently at the top of the Type-1 section, especially your post Tigger.
Jus

 

[megan]

Re: Lantus problems

this is really good to read.......my problems aren't so much based round the loss of symptoms (mainly because my sugars are so flippin high!!!!), although when i have had better sugars i have had the odd occasion where i have got to a 1. something and not been aware...and by chance i have tested because i was doing heavy gardening and thought it sensible to watch myself!!!!! thank god!!!

i have gained lots of weight particularly in the last two years...... i was put on lantus approx 7 years ago after my second baby was born.....i wore a continous blood glucose monitor for 3 days before doing this and then sometime later to see the difference.....i never saw these charts but i understand there was an improvement and of course i saw it for myself briefly.....the main improvement was the constipation!

then about 3 years ago i got switched to levemir.....i have gained more weight since being on the DAFNE program, perhaps because you do dose adjust to what you eat.......but even on trying to lose weight it doesn't work for me.
two years ago i went onto metformin...4 tablets a day....(and onto prozac at the same time),
so now over the last 7 years i have gained 2 stone plus, got far more tired and foggy headed, not much energy or long lasting when i do have it.

so i would like to try animal insulin as a change and hopefully improvement.....will meet with my gp to ask for the right one.....although he has all the answers already.........but he has said he will support my decision if he is able to manage to get the insulin....so fingers crossed......but what do i ask for? what animal insulin does everyone else go onto?

 

[irishrichard]

Re: Lantus problems

I"ve been on Lantus for nearly the last 5yrs and never had problems until the last month! For the last few weeks I get hypos during the night no matter what dose of lantus i take in evening! 30 units is my usual but even at 20 units have had hypos for no reason really!
Before I took Lantus in morning which was great as never had hypos in nighttime

Have appointment weds to speak about it with diabetic nurse but want to just go back to taking it during morning time!

Hope you get your problem sorted asap

 

[janabelle]

Re: Lantus problems

Hi,
I was wondering if anyone on the forum / moderators know what happened to SarahQ? She's replied and referred to at the beginning of this thread, but her posts are no longer there?
thanx
Jus

 

[cugila]

Re: Lantus problems

Hi Jus.

SarahQ was a former Moderator who left this Forum some time ago. She deleted all her posts before leaving.

Ken

 

[janabelle]

Re: Lantus problems

Thanks for that info Ken.
Richard, I had similar problems, and this link gives one explanation of why it might happen. http://www.healthcentral.com/diabetes/c ... ntus-lows/ I have my doubts that it's the only explanation, as my daily control was erratic and unpredictable, despite my best efforts.
I had many days when I was hypo for no reason, and others when Bg would rocket for no reason.

The side-effects issue may be seperate. I wonder if people on higher doses suffer more side-efffects? Having fairly recently discovered a diary I forgot I'd kept, from 2006. It shows that I was more ill, ie; feel really deathly,be completely out-of-it, unable to function , walk or think straight, on the days when my doses were higher-44-46 units.
Jus

 

[irishrichard]

Re: Lantus problems

Thanks for the link

Have strange BG levels either very low or high sometimes that i can't explain!
The other day woke at 6am, checked bloods and they were 22.6 and rechecked half hr later and it was 7.1 ! had'nt took apidra so reckon my body must be playing up Hoping to be back in key but end of week if i switch to taking lantus on days! Diabetic Nurse complains I"m too pro-active in my care so will suggest to her on weds that i change from taking dose in morning rather than night time!

 

[noblehead]

Re: Lantus problems

Thanks for the link

Have strange BG levels either very low or high sometimes that i can't explain!
The other day woke at 6am, checked bloods and they were 22.6 and rechecked half hr later and it was 7.1 ! hadn't took apidra so reckon my body must be playing up Hoping to be back in key but end of week if i switch to taking lantus on days! Diabetic Nurse complains I"m too pro-active in my care so will suggest to her on weds that i change from taking dose in morning rather than night time!

I can't see that being possible to drop from 22.6 to 7.1 after only 1/2 hour without any meds. It may be worth checking your bg meter by doing a control test. Also, sometimes if you have touched something sticky or sweet with your fingers and then test, you get a false reading (higher).

I know someone who tested and was 23.1, corrected with insulin but then remembered she had been holding some sweet substance before testing, forgetting to wash her hands, tested again straight away after washing hands and was 7. Needless to say that it was a lesson learnt.

To be safe, check your meter accuracy.

Nigel

 

[irishrichard]

Re: Lantus problems

Hi Nigel,

Meters running fine, its must be just me
I can deal with having low or high blood levels if I can find a valid reason but thats my problem at moment, no logical reasons for the differences!

Hoping to get it sorted this week by talking with diabetic nurse