changing lantus

[janabelle]

Hi Simon, welcome to the forum
You asked whether you should be concerned about Lantus, but I think you answer the question yourself in your post. You've not had a BG below 10 in 6 months! Your diabetes team should not be letting this continue, it's disgraceful. The Lantus or dose of Lantus is clearly not working for you, and you need to see your doc as soon as poss to avoid future complications. You need to speak to your diabetes team about increasing your basal dose ;( although I'd never reccommmend that anyone take, let alone increase Lantus for obvious aforementioned reasons :evil: )
Something needs to be done to ensure your levels are significantly lower, and nearer "non-diabetic" levels. Has your consultant told you what levels to aim for before and after meals? You should make an appointment with your team to discuss your concerns.
best of luck
Jus

 

[sasha1]

Hi Heidi,
I don't really know what to say, I feel so awful for what your son & you have been through, and I'm so pleased you've posted on this forum I don't doubt you're wondering, like I often do, how many other poor kids are put on this rubbish that doctors have the cheek to call "insulin" and told they're insulin resistant or have " double diabetes"- never heard of till synthetic insulins, I'm quite sure. :cry: How can a doctor not question a recently diagnosed child that loses their hypo-awareness???
As for putting type-1s on metformin that is downright dangerous, metformin suppresses glucose production form the liver, making it less likely that a type-1 could bring themselves round from a severe hypo.

I have a friend who's son was diagnosed type-1 two years ago, and as much as I've told her about my and other's experiences with Lantus and other synthetic insulins, I was wary of alarming her so soon after his diagnosis, but felt sick that her son was possibly going to suffer what I had.

It's human nature to trust "experts", doctors, diabetes specialists, nurses, etc; and you should be very proud of yourself for questioning that and wanting the best for your son. My husband and I did the same when our 11 year old had a cancer relapse and we were told by GOSH that only palliative care would be offered- we couldn't and didn't accept it, and after further experimental treatment, only intended to give him more time, he passed his 6 years in remission last Christmas, and turned 18 in February.

Your post will help many- the only reason I keep on this forum is to go on and on and on and on about this, and if it bores anyone I make no apology- please do the same
The IDDT are fab!! Also don't forget to report all your son's ailments that he suffered on Lantus to the MHRA Yellow Card Scheme, to ensure it remains under the very close supervision it clearly deserves :evil: Here's the link http://yellowcard.mhra.gov.uk/
Keep posting ,the forum needs you
Jus xxx

Hi Janabelle,

Can I wish your son a belated Happy 18th .. ... and a massive hug on his 6 year remission .. I am sure both you and his dad are immensely proud of him .. and you have my respect and admiration for your determination in getting your son the treatment he needed.

I share your views wholeheartedly on the Lantus issue .. and have a major bug to bear with it and certainly will not rest till this Insulin is withdrawn ... it is **** right dangerous to the core .. supervision is not enough ... but that is my opinion but I do know it is shared by so many others.. and what drives me totally insane is the medical world, know exactly what it is, and are still happy to prescribe.

This again my only be my view ... as a parent ... but surly diabetes ..does'nt need to be treated with an aggressive insulin ..which Lantus is ... surly a more natural one is appropriate . as a non-diabetic I don't produce aggressive insulin ....

As for the use of Metformin .. alarmingly there are several teenagers/children already on it in my sons clinic ... and I am and was less than impressed when it was introduced .. I even had to phone the childrens ward as on the patients user information sheet .. it clearly states .. that if this is going to be used alongside insulin in needs to be done so in hospital ... the answer I got when DSN eventually phoned me back was .."We have never done it in hospital" ... ...

Unfortunately it seems the medical team dislike my approach , and certainly do not like it when I challenge there ideas ... but I have one answer to that .. TOUGH ... He is my son ... and deserves the best treatment available to treat his condition .... as any child or adult should be regardless of there condition .. Lantus is not treatment by any means .. nor will I apologise for that ..

I would recommend IDDT to all ... amazing ... I have also completed the MHRA Yellow Card .. that was done this morning ..

I will also keep posting on this forum, especially where Lantus is concerned ... and I to will go on and on about it .. and as you will make no apologies for it.

Take care

Heidi
xx

 

[janabelle]

Hi Heidi,
Thanks for your kind wishes for my son, he says hi!
I love your attitude, and not surprised your diabetes team don't- but as you say "tough"!!!!
If you've spoken to Jenny at the IDDT you'll know that she was in similar circumstances to you with her own child. It's newly diagnosed kids who will be suffering the most; especially if they are told that feeling ill, exhausted, having no hypo-awareness and insulin resistance is a normal part of being diabetic. :evil:
Maybe a campaign to ensure that EVERY diabetes team in the country (or the world), is given information about the problems that can be associated with GM analogue insulin, could change things for the better.
Hope your son's health keeps improving and so pleased he's feeling better. Be interesting to hear what your clinic have to say, and whether your son's experience will change their attitude to other patients.
take care
Jus xx

 

[DiabeticVeteran]

Hi All,

There are two very good threads on this forum relating to Lantus Insulin.

What is surprising here is that there are two patterns:

1. Almost everyone that has been on Lantus, has had the same experiences/symptoms over time.

( I had these exact symptoms but took longer to actually diagnose, different time spans for different people & of course the support from your DSN team, which was sh*t in my case!)

2. Due to our frustrations with it all & the lack of good support from DSN's & consultants, it is getting apparent that WE as the patients are getting to the point of knowing more than the DSN's & possibly consultants as well.

From first hand experience, when challenged, they hate it! It's the look on their face that gives it away stating " How dare you know more than me, you take the insulin to what we advise"

The consultants & DSN's expect us to listen & adhere to their instructions......BUT when we express our views/concerns about what is happening, they dont want to know!! :evil: :evil:

Its a One way street!

My biggest problem when I was on Lantus was the Hypo's & I expressed this to my consultant. All he suggested was "Just adjust your dosage!"

Now I have changed to animal Insulin & feel much better for it, given my current circumstances at the mo.

Well done to all for posting here. This will be a great resource for people. :wink:

Regards,

Steve :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen:

 

[sasha1]

Hi All,
There are two very good threads on this forum relating to Lantus Insulin.
What is surprising here is that there are two patterns:
1. Almost everyone that has been on Lantus, has had the same experiences/symptoms over time.
( I had these exact symptoms but took longer to actually diagnose, different time spans for different people & of course the support from your DSN team, which was sh*t in my case!)
2. Due to our frustrations with it all & the lack of good support from DSN's & consultants, it is getting apparent that WE as the patients are getting to the point of knowing more than the DSN's & possibly consultants as well.
From first hand experience, when challenged, they hate it! It's the look on their face that gives it away stating " How dare you know more than me, you take the insulin to what we advise"
The consultants & DSN's expect us to listen & adhere to their instructions......BUT when we express our views/concerns about what is happening, they dont want to know!! :evil: :evil:
Its a One way street!
My biggest problem when I was on Lantus was the Hypo's & I expressed this to my consultant. All he suggested was "Just adjust your dosage!"
Now I have changed to animal Insulin & feel much better for it, given my current circumstances at the mo.
Well done to all for posting here. This will be a great resource for people. :wink:
Regards,

Steve :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen:

Hi Steve ...

The patterns are very clear with Lantus ... and problems usually start about 6mths in ... the whole thing is alarming ..

Having Nathan changed form the above rubbish .. to animal insulin .. has been the best thing I have ever challenged .. The change in Nathan .. is more of a transformation ... nearly 4 weeks ago ... he was withdrawn, looked ill, tired all the time etc, etc ... now he has energy, enthusiasim , a lust for life all 15 year old boys should have ... came 2nd in discus at school and raved about it .. bearing in mind previously any thought of sport he would try and get out of, concentration off the scale, sleep patterns superb, only 2 hypos as apposed to 2 a day on Lantus .... Its like I have my Nathan back before being diagnosed type1 .. hope that bit makes sense .... my only worry as a mam I have is that no long term damage has been done ... I just hope that my fears dont come home ...

I'm going to put my neck on the line here .. but I would urge anyone on Lantus to get off it ASAP

Heidi
xx

 

[DiabeticVeteran]

Hi All,
There are two very good threads on this forum relating to Lantus Insulin.
What is surprising here is that there are two patterns:
1. Almost everyone that has been on Lantus, has had the same experiences/symptoms over time.
( I had these exact symptoms but took longer to actually diagnose, different time spans for different people & of course the support from your DSN team, which was sh*t in my case!)
2. Due to our frustrations with it all & the lack of good support from DSN's & consultants, it is getting apparent that WE as the patients are getting to the point of knowing more than the DSN's & possibly consultants as well.
From first hand experience, when challenged, they hate it! It's the look on their face that gives it away stating " How dare you know more than me, you take the insulin to what we advise"
The consultants & DSN's expect us to listen & adhere to their instructions......BUT when we express our views/concerns about what is happening, they dont want to know!! :evil: :evil:
Its a One way street!
My biggest problem when I was on Lantus was the Hypo's & I expressed this to my consultant. All he suggested was "Just adjust your dosage!"
Now I have changed to animal Insulin & feel much better for it, given my current circumstances at the mo.
Well done to all for posting here. This will be a great resource for people. :wink:
Regards,

Steve :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen:

Hi Steve ...

The patterns are very clear with Lantus ... and problems usually start about 6mths in ... the whole thing is alarming ..

Having Nathan changed form the above rubbish .. to animal insulin .. has been the best thing I have ever challenged .. The change in Nathan .. is more of a transformation ... nearly 4 weeks ago ... he was withdrawn, looked ill, tired all the time etc, etc ... now he has energy, enthusiasim , a lust for life all 15 year old boys should have ... came 2nd in discus at school and raved about it .. bearing in mind previously any thought of sport he would try and get out of, concentration off the scale, sleep patterns superb, only 2 hypos as apposed to 2 a day on Lantus .... Its like I have my Nathan back before being diagnosed type1 .. hope that bit makes sense .... my only worry as a mam I have is that no long term damage has been done ... I just hope that my fears dont come home ...

I'm going to put my neck on the line here .. but I would urge anyone on Lantus to get off it ASAP

Heidi
xx

Hi Heidi,

I totally agree with what you have written in your post & I am sure MANY people have the same feelings.......BUT due to the Politics, they are put off from saying such things.

Going from your experience with your Son & my experience with the whole thing, the negligance of the DSN's, previous consultants expressing concerns, this is part of the everyday challenges PEOPLE that are on Medication have to endure. Whether if it is GM insulins or drugs...... they have side effects. We were keep in the dark & were told other things.
Possibly again, many people feel the same way about this.

It is not about slagging of insulins but it is finding the truth as to what the effects can do. The lack of medical testing & then only to find out years later, people are experiencing major psychological/physical problems. Again people being kept in the dark.
Lantus was never tested long term & many people know this. It was the truth, nothing more. We as the people should be respected for this because it is us that is being effected.

Sorry for the post & this should not really be ignored.

Steve :mrgreen:

 

[sasha1]

Hi Heidi,

I totally agree with what you have written in your post & I am sure MANY people have the same feelings.......BUT due to the Politics, they are put off from saying such things.

Going from your experience with your Son & my experience with the whole thing, the negligance of the DSN's, previous consultants expressing concerns, this is part of the everyday challenges PEOPLE that are on Medication have to endure. Whether if it is GM insulins or drugs...... they have side effects. We were keep in the dark & were told other things.
Possibly again, many people feel the same way about this.

It is not about slagging of insulins but it is finding the truth as to what the effects can do. The lack of medical testing & then only to find out years later, people are experiencing major psychological/physical problems. Again people being kept in the dark.
Lantus was never tested long term & many people know this. It was the truth, nothing more. We as the people should be respected for this because it is us that is being effected.

Sorry for the post & this should not really be ignored.

Steve :mrgreen:[/quote]

Hi Steve ..

Thank you and to the many others who may feel the same about me on this issue ... This is the first time I have been able to air my concerns without been told to keep quiet .. as to not cause alarm ... But I like many others will not be put off from challenging politics etc ...

Yes .. true there are risks and side effects associated with taking many medications for various conditions .. and yes people accept this as part of it ... But surly we all need to be aware of all aspects to make an informed decision on that being the right medication ... is that not a basic human right ... .. I had to do many hours of research on Lantus .. as questions were not been answered by the people who were supposed to know ... and when challenged it was if I should not know anything .. and how dare I question ...

Absolutely, its not my intention to **** any insulin off ... I am grateful for its very existance as it has kept Nathan alive for over the past 3 years ... I'm just made up I have my son back .... I truly believe that he was being poisoned by Lantus ... and I will tell that directly to his consultant in a couple of weeks ....

The truth is out there ... and on what scale manufacters, medical profession etc knew what was going to happen .. I guess like many things will be kept in dark ... my only hope that the current research regarding Latnus and safety of Analogues .. as read in the IDDT Newsletter .... will propel it well into the daylight for all to see ... Yes I knew about it not being long term tested .. but that was'nt till recently .... when I found out it made me more determined to push for animal insulin ... and am still rocked to the core about it ... :shock: ...

As I say to Nathan ... "Your on the premium un-leaded now son, so your engine is running smoothly" :wink: ..

Take care ..

Heidi
xx

 

[Anonymous]

Whilst it is an accepted fact that there are people on this forum and elsewhere who have had problems with Lantus it is also a fact that there are many hundreds of thousands worldwide who do not have any problems with it. Being passionate about a subject is no excuse for posting slanderous or libelous comments on this forum. This forum would be held responsible.

This conduct will not be tolerated here.

It seems that there are those who are following a 'Personal Agenda' by continually posting about the 'dangers' of the drug. This forum does not allow such things and if the members wish to post about their experiences with the drug then please desist from emotive comments which cannot be justified.

Such emotive statements will be deleted and if it persists then the members/s may be subject to suspension and/or banning.

We hope that this behavior will now stop and normal debate will continue.

Mod 3.

 

[sf352]

Hi Simon, welcome to the forum
You asked whether you should be concerned about Lantus, but I think you answer the question yourself in your post. You've not had a BG below 10 in 6 months! Your diabetes team should not be letting this continue, it's disgraceful. The Lantus or dose of Lantus is clearly not working for you, and you need to see your doc as soon as poss to avoid future complications. You need to speak to your diabetes team about increasing your basal dose ;( although I'd never reccommmend that anyone take, let alone increase Lantus for obvious aforementioned reasons :evil: )
Something needs to be done to ensure your levels are significantly lower, and nearer "non-diabetic" levels. Has your consultant told you what levels to aim for before and after meals? You should make an appointment with your team to discuss your concerns.
best of luck
Jus

Hi Jus. Thanks for the welcome and the advice! i only started inslin (lantus and novorapid) 2 weeks ago, the high bg for the last 6 months was because my gp had me on diamicron. Have sacked the gp!! I 've only been with the consultant 3 weeks and the diabetes team for 1. So far the results are good, bg is down to 11/12 in mornings and between 5 and 9 throughout the day? Just stumbled across this thread by accident and was curious.

 

[janabelle]

Hi again Simon,
You sound a hard man-sacking your GP indeed!! :lol:
Great news your levels are down!
What is diamicron, and what were you taking it for; never heard of it before, and not had time to google it
Jus

 

[sugarless sue]

Diamicron is another name for Gliclizide.

 

[phoenix]

I would agree with the moderators about this.
There are many thousands of people who use lantus sucessfully.

I certainly had none of the problems with lantus described by others here. I took it from the start 5 years ago and it worked well fo me, I had no side effects and felt a lot better than before diagnosis.I now quite happy to use Apridra in my pump, again from the same manufacturer. I'm sure that some insulins cause some problems to some people I really don't think that everytime someone reports a problem with control or mood etc that lantus will be the culprit (of course if you ask them which insulin they are using, they are very likely to answer lantus since there are only 2 modern basal insulins)

Here in France I haven't noticed any great concern about it. I did a search of the forums the other day , lots about basal adjustment and splitting doses, a few about the recent cancer reports but only a few of threads, mentioning possible side effects. None of of these seem to have caused great emotions . For example the most recent had one person saying that they were more tired and had more hypos than before whilst others answered about dose adjustment and saying that they had worse problems with older insulins .
For a complete contrast to this thread here is one from 2005, 2 years after it's introduction.
It is called, lantus a true progress
http://forum.doctissimo.fr/sante/diabete/lantus-vrai-progres-sujet_151106_1.htmstarts
depuis que mon fils est sous lantus, son equilibre est quasi parfait.
et vous quelle est votre experience avec cette insuline?
(since my son has started using lantus, his control is perfect, what is your experience?)
Most were positive, one said they started well having had poor control on older insulins but was beginning to be less well adjusted, others had realised it didn't last 24 hours and there was a concern about using it in pregnancy This thread contains phrases such as 'vive la lantus', and 'Quelle liberté depuis que je suis à la lantus!!' So some people are happy with it.
Animal insulins are no longer licenced for use in humans in France .

 

[DiabeticVeteran]

Hi Pheonix,

It is pleasing to see that you acknowledge the validity of patient experiences by stating that it is fact that there are people who have problems with a certain Insulin, in turn, this is something which is easily demonstrated in the published Yellow Card Adverse Reaction Reports.
But I have to comment with your statement that it is ‘fact’ there are many thousands of people worldwide who do not have problems with it.
What is fact is that there are many thousands of people who use Lantus but given your statement that it is ‘fact’ that these people do not have problems is assumption and not fact gathered from evidence. Unless, large-scale research is carried out that investigates quality of life issues for people using Lantus compared to human and animal insulins.


All people have been doing, is expressing their experiences & while it appears good news for people that havent experienced problems on this, what about the other individuals life's that have been turned upside down only to realise after changing One thing, they have regained their life's back.

Basically, we are all different as people & certain things will never agree with us. That why in this case, we should be given the choices, rather than be told otherwise.

Sorry to be to the point.

Kind Regards,

Steve

 

[cugila]

For the information of all members.

To the point........the 'fact' statement was not made by Phoenix......but by a Moderator. That decision is final. It has been explained to you why that post was made and why Moderator's do not discuss with members. That is the Policy on this Forum.

It is a 'fact' that not every body has trouble with Lantus. That is what we should all understand. Nobody is taking any issue with the 'fact' that SOME people have issues with Lantus. That is taken as read.

Anybody can post opinions about Lantus, good or bad, however the language used must be reasonable. As has been stated before when members were warned about this then 'Emotive' statements will not be allowed. Your experiences are always welcome however.

What is the point here is that others around the World do NOT have issues with Lantus despite the impression given in some posts that everybody on the Drug seems to. This needs to be put into perspective here.

This Forum is not a platform for a campaign against Lantus and it's manufacturers. That can take place elsewhere, I believe some members were interested in setting up their own website and also talking of 'class actions ?' That is what will not take place here.

I hope that the members concerned will read this and temper their language and modify their comments. We do not wish to have to ask Moderators to monitor posts all the time.
Co-operation in this would be welcomed.

Cugila and Sugarless Sue
Forum Monitors

 

[phoenix]

Well I've just lost my post to the ether, so perhaps fortunately you will not have to read it! However, there are several studies showing patient satisfaction with lantus, some comparing it to NPH, with in total several thousand subjects. By no means are all the studies funded by the company. (see pubmed: Lantus patient satisfaction) for studies.

 

[sf352]

Hi again Simon,
You sound a hard man-sacking your GP indeed!! :lol:
Great news your levels are down!
What is diamicron, and what were you taking it for; never heard of it before, and not had time to google it
Jus

Thanks! He was living on another planet! He thought my levels were ok??!! The consultant said i should have been to see him from day 1. Diamicron is a brand name for glycazide. Was given it by the gp to bring levels down when he thought I was type 2. It worked but not very effective as I'm now type 1! :shock: still getting used to sticking myself 50 times a day, the novelty has worn off now :roll: asced my diabetes nurse about the issues with lantus discussed here and she said she hasn't come across any as long as shes been dealing with it and theres 1000's out of her hospital on it??

 

[maryrachel]

Hi

I have recently changed from Lantus to Levimir. Can anyone tell me how soon you expect to notice positive results from the switch? i was/am tired all the time and have big fluctuations in my sugar levels although HBA1c not too bad as usually 7 to 7.5. not great either I know.

 

[janabelle]

Hi Maryrachel,
I don't know of anyone who's changed from lantus to levemir, maybe someone who has done will post a positive message for you.
Just as many people had probs with synthetic human insulins in the 80s, is not beyond the realms of possiblility that your problem could be with analogue insulins. Not everyone is suited to a particular insulin type.
How are your sugars thoughout the day & how high and low are you going?
if you're still not happy and feeling tired, etc; you an always ask to be changed to animal insulin. You could give it a try to see if you feel any better, and get better control.
See how you go, maybe when your BG levels settle you'll feel a bit more energetic.
Jus

 

[jopar]

Maryrachel

How long have you've changed? It can take a little time for the Lantus to completely leave the system...

Have you done any fasting tests to ennsure that you've got your basal set right, and you've worked out your carb-insulin ratio's (these can veiry during the day) are correct?

It might be that you need to split your levimer to two injections to cope with different needs during the day..

I've used to use levimer before I went on the insulin pump, I had no problems with it except I did have to split it to 2 injection to attempt to create as flat basal profile as possible... Where as my OH who still uses Levimer is lucky enough that one shot does the trick, his tail off is good timing, but he does if eating late have to make adjustments (after 8pm) to his quick lowering the dose other wise he will hypo out later in the night (his has his Levimer shot at 10pm)...

Human insulin isn't as evil as some protray, I've used both Animal and human and not had a problem with either, my OH has also used Animal and human insulins, he had problems with Animal insulins, requireing regular changes of animal insulin as he would build up anti-bodies and the would become inffective as time went on... A problem that he hasn't had with Human insulin..

Another agrument that is always used is that Human insulin creats hypo unawearness, and Animal doesn't, the problem people had in the main when they change from Animal to Human was a change in hypo symptoms, for some they became a lot more suttle others completely change and a lot of people didn't really like having to relearn there hypo symptoms.. And BG testing at this time was still very much undeveloped so this didn't help... You can become hypo unawear with either Animal or Human insulin...

Another consideration between the two, is that they are slightly different regimes as such, Human quick acting can kick in and hit a lot faster than Animal insulin which you have to inject 1/2 hour piror to eating... So timing of injection need to be considered and ruled out, as it's a lot easier to miss time human than it is Animal...

Purificatin of Animal insulin was a major problem with other protien contamminating the insulin which caused havoc, until around the 60's became less of a problem after this, Human insulin doesn't suffer this..

Doesn't matter what type of insulin you use it still has some perservitives in it (animal also has chemicals used for purification) Human insulin depending on which manufacuter will be manufactured either using yeast or e-coli as it's growing medium (if thats the right phrase) if you don't get on with one of the ingredients used in manufacturing of a particular insulin it's gonna cause a problem...

 

[DiabeticVeteran]

Hi

I have recently changed from Lantus to Levimir. Can anyone tell me how soon you expect to notice positive results from the switch? i was/am tired all the time and have big fluctuations in my sugar levels although HBA1c not too bad as usually 7 to 7.5. not great either I know.

Hi Maryrachel,

I can not comment on the positive results regarding the Insulin you have changed to but if you are intriqued, keep a Daily Diary & note down anything you see or feel different in yourself. Also, if people see changes in yourself, again write them down. The importance of doing this, is for your own convincing.
I did the above to see if there were changes & for me I was pleasantly surprised.

Regarding your HBA1C Blood tests, currently mine are 7.6% but my consultant is very happy with this, as I am not getting the fluctuations in my Blood Glucose control, meaning, not getting the hypos anymore. It can only get better.
There has always been a very big debate on HBA1C results & I would not look too much into this. If you & your consultant are happy with the control, use this as your main target.
Lower HBA1C results are NOT neccessarily better!

Please let us know how you progress.

Regards,

Steve :mrgreen: