changing lantus

[Curleous]

Hi there
am just curious how many people have changed from Lantus and have felt better and what if i try and dont get on with new insulin, and then decide to go back to Lantus..are there any problems with swapping and then reverting back. I have excellent control with lantus and diet but just dont feel 100 pc and have started to get aching wrists , joints and some othe minor problems and was just wandering as i have consultant visit soon...

thanking you all

Curleous

 

[janabelle]

Hi Curleous,
You will only know if Lantus is causing the problems you're having, by getting off it. I don't know of anyone who's come off Lantus when experiencing extreme lethargy, pain, etc, etc; and not felt better.

You say you've got good control on Lantus, I thought that too for the first year, but I did have the other side-effects, anxiety, neurological symptoms and aching shoulders and arms within months of being on it. The problems with Lantus can be vague to start with, which is why Lantus is not suspected in many cases. For many people the side-effects are cumulative, and unfortunately people can be on it for years before they make the link between their symptoms and Lantus.

If you change and didn't feel better, I'd be surprised, but I don't suppose there would be a problem with changing back if that's what you chose.
It's probably worth a try anyway

Jus

 

[kewgirl]

Hi Curleous

Changing from Lantus I have seriously got my life back.

There is no problem returning to an insulin you have previously used – after all I went from animal insulin to that allegedly fantastic new analogue Lantus before my health deteriorated and then went back on animal insulin. I now feel like a new woman :!: :!: :lol:

If you are not feeling 100% whilst using Lantus many symptoms associated with using it disappear once you come off it.

Its also worth remembering that anecdotal evidence suggests that users of Lantus appear well for the first 18 –24 months before they begin to start feeling side effects and there is undoubtedly a cumulative effect.

The other thing to bear in mind is that if you want to change insulin it is your choice to do so and don’t be told otherwise from your diabetes team :!:
The majority of insulin users having problems with Lantus are generally offered the other GM synthetic analogue Levemir but there are some excellent animal insulin’s & human synthetic insulin’s available.

As janabelle posted - give it a try and see how you get on.

All the best.

Txx

 

[Curleous]

Thanks for these replies.

I have a consultant appointmnet on Tuesday and will mentin it to him then but i know what he will say as he was one of the consultants involved in the trial and is very upbeat about Lantus from the previous appointments that i have seen him and discussed things.

I am really keen to try another insulin but also deeply apprehensive as the only other one i really read about on here is Levemir.

Can someone please point me to a good link to explain the different types of insulins as i am still a bit confused on all the different types ( analogues synthetics animals etc ) I have only been type 1 for 9 months so still on a rapid learning curve.

Many Thanks again to all..

Andy

 

[kewgirl]

Hi Curleous

Your consultant might be very “up beat” regarding Lantus – but has he/she actually used this particular synthetic analogue insulin?! :lol:

Please also don’t be “deeply apprehensive” regarding trying another type of insulin – after all health professionals don’t even consider the potential impact changing an insulin has for a user when the health professionals are being seduced by drug companies.
There have been horrific anecdotal accounts of insulin users being herded into a clinic in groups at a time & being presented with a box of Lantus and being informed “your insulin is changing and here is the new stuff”. :shock: :shock:
I have tried over my 39 year diabetic career many types of insulin – some very good, some ok and some positively ghastly.

It is also worth noting that although there are now 3 types of insulin available in the UK at present the actual choice within each type particularly animal insulin & human synthetic insulin has diminished rapidly. :shock:
Within each type there are a variety of insulin’s, which differ in the way they act and/or how long they last known as the action profile.
One slight snag is that the action profile in theory and on paper can often be very different when the insulin is injected into a living human – thus why some insulin’s just do not work for some users. :shock:

Animal Insulin
Human Synthetic Insulin
Genetically Modified (GM) Synthetic Analogues.


Animal insulin is extracted from the pancreases of dead pigs (Porcine / Pig Insulin) and cattle (Bovine / Beef Insulin). Following extraction they are highly purified. Animal insulin is the oldest type of insulin in use.
However……in the 1920’s to overcome the shortage of beef insulin whale (as in the large mammals that swim in the sea not the country) insulin was also manufactured. :shock:
Examples in use in the UK today: Short acting - Hypurin Porcine (Pig) & Bovine (Beef) Neutral Insulin.
Medium / Long acting - Hypurin Porcine (Pig) & Bovine (Beef) Isophane Insulin, Hypurin Bovine Lente & Hypurin Bovine Protamine Zinc Insulin (PZI).
:idea: Bovine (Beef) animal insulin is one of the gentlest insulin available.

Human Synthetic Insulin is not extracted from dead humans!
It is made in the laboratory using recombinant DNA technology based on the DNA structure of insulin that human pancreases secrete.
Human insulin is grown in the lab inside common bacteria. The bacteria Escherichia coli or E-Coli is by far the most widely used type of bacterium, but yeast cells are also used.
Human synthetic insulin was developed to make insulin more available world wide.
There were concerns that the supply for insulin globally would outstrip the supply of animal insulin, which has in fact not happened.
Examples in use in the UK today: Short acting – Actrapid, Humalin S, Insuman Rapid.
Medium/Long acting – Insulatard, Humulin I, Insuman Basal.

GM Synthetic Analogues
The newest kids on the block! Manufactured in the laboratory by modifying the chemical structure of human synthetic insulin so that the resulting compound has different chemical properties to human synthetic insulin. Insulin analogues are therefore man made or artificial products cultivated from deactivated e-coli or bakers yeast cells.
Examples in use in the UK today: Rapid acting - Apidra, Novorapid, Humalog.
Long acting - Lantus, Levemir.

In theory and on paper the GM synthetic analogues Lantus & Levemir look fantastic – the idea is that their profile mimics functioning pancreas / beta cells by providing basal (background) insulin with a flat profile – insulin users would then only be required to inject one basal injection a day and inject an rapid acting analogue such as Apidra, Novorapid or Humalog when they eat.
After injecting into subcutaneous tissue, Lantus for example forms a depot of insulin, of which small amounts are meant to slowly move into the bloodstream. Levemir on the other hand attaches itself to albumin in the blood and as the blood circulates it releases the insulin. I have made this extremely simple as actually its a tad more complicated than that!
:idea: Synthetic analogue insulin is the most aggressive insulin available.

Insulin is like a string of beads and the way in which the beads are linked together and more significantly how they come apart denotes the mode of action for each of the respective types thus some insulin’s begin acting very quickly after injecting and other insulin’s take longer to work.

Some insulin are combined so the short acting & the longer acting component of the insulin are mixed together.

:idea: Human synthetic insulin & GM analogues have differences in their amino acid structure whilst animal insulin – particularly porcine (pig) insulin has the nearest amino acid structure to human (non synthetic) insulin.

If you want to do some more reading the following are useful:

Insulin – A Voice For Choice by Arthur Teuscher.

Type 1 Diabetes in children, adolescents & young people by Dr Ragnar Hanas (don’t be put off by the title cos I have a copy of my book shelf and its very useful.

Using Insulin by John Walsh and others – ditto as above.

There is a humongous amount of information to learn when diagnosed with diabetes so I hope the above has helped rather than confuse you.

Best wishes

Txx

 

[sunflower333]

thanks Kewgirl for that, some interesting reading!

 

[jopar]

I've never used Lantus, but have used Levimer without a problem as such, but due to DP's I had to split my dose into 2 a day... Levimer is promoted to last 24 hours, but for some it does and others it doesn't, and tails off around the 18 hour mark..

It seems that in most clinics there are reluctant to use animal insulins prefering on of the human types, so yep it is likely that your consultant is going to be difficult to persude a change to animal...

It might be easier to change to Levimer first and see how you get on with this... The only concern is that if you've got good control using the Lantus and this seems to be your consultant insulin of preferance he might not listen to your explination of 'but I just don't feel right'

But there is something that might play in your favour, Lantus has a different PH balance than Levimer (and slightly different perservitives) which can cause stinging and/or soreness at the injection site and how on the earth can they prove that you are telling porkies that it does or doesn't sting when you inject it, or the injection site is sore and red for several hours after you injected :roll:

If you then find Levimer doesn't solve your problems, you then go for the animal insulin or an insulin pump where you use quick acting insulin only for both background and for your food.. And if you've got a cost consious (penny pinching consultant/PCT) they have you on Animal quicker than you know rather than fund the cost of a pump

 

[Curleous]

Thanks again for these replies.

The post about the insulins was extremeley useful.

I will try to persuade the consultant on Tuesday for a change to Levemir i feel.
Thanks again

Andy

 

[richie67]

Hi Everyone,
I'm a bit of a newbie and not sure I should start a new post, but also do not want to hijack this!

It is along the same lines!! !! Moderators please move me as you see fit!!

I have been a Lantus user for 18 months (since diagnosis with good control) and have over recent months started to suffer from what I can best describe as the feeling of a "hangover" almost everyday, all day (headaches and lethargy)!!! Couple this with an insistent buzzing in my ears and my previously control of BG 7- 9 now 12 - 16 in the morning, I went to see my new German G.P.

I have attended DAFNE and increased dose adjustments of Lantus which had no effect. I have checked my BG between 0200 & 0300 in the morning (5 - 8 ) to check for Hypos, thinking they were causing the ill feeling!!

My new G.P ordered Bloods which were 9.3, but bearing in mind the overnight/morning, are about right as during the day they are pretty much perfect!!
He has suggested I switch to Insuman and 1 injection of 14 at bedtime, as he suggested it was a faster acting Basal. This has not worked as I am up to 18 units and still high in the morning!!!

Could anyone suggest what is going wrong!!! I was an Outpatient at Salisbury Hospital until recently but have lost their number.

 

[jopar]

Hi riche

I hadn't come across Insulman before so had to google it, I found it's ema. europe assesesment report http://www.ema.europa.eu/humandocs/PDFs ... 696en1.pdf

Checking it's profile, it takes around hour for it to kick in, peak action around 3-4 hours, and is active around 17-20 hours..

So if you injecting at 10pm it 10.30pm ish and it starts to kick in and it's peaking at around 1-2pm in the morning, not sure what tail off it's got though.. I should imagine this starts quick than Lantus would though..


If under Lantus your 2-3am BG's were within range, and you can't pin your morning reading to a rebound hypo (unless you are hypoing, at 4-6am ish) then one would be looking a Dawn Phanom effect, were your liver pumps more your blood to get the body up and ready to go... If this is the case then it will be difficult to move forward with the insuman, as if you increase it to lower the morning figure, you would be in danger of having a hypo eariler when it's action is at it's peak...

Anothr thought, Lantus is know to cause all sorts of problems for some individuals, (Janabelle will give you the low down) From weight gain, to many other systems has a nasty habit of working for a while then failing...

Insuman is manufactured by the same company as Lantus, and it's also a human based insulin, I ponder whether if based on similar ingredients?? And it's this that is giving you the problems/side effects and not a direct link to control problems/issues..

Perhaps you may be looking to use an insulin from another manufactuer, human insulin this would be Levimer or perhaps a move over to Animal insulin might better resolve your problems?

CarbRok and Janabelle know a lot more than I do, about animal insulin, as it's a long time since I've used it (I've never had probs with the human insulin, but I haven't used Lantus though)

 

[janabelle]

Hi Richie,
Like Jopar, Insuman is not an insulin I'm familiar with, interesting that you've been prescribed another Sanofi Aventis product though :? Are you still suffering the "ill & tired" feeling or has that improved since coming off Lantus?
Looking at the insulin profile chart Insuman has the shortest duration of all the medium and long-acting insulins. It peaks early then tails right off. Insulatard has a much longer peak and duration. However if you think you have a prob with synthetic insulin, and many people do, you could think about porcine or bovine Isophane, or Bovine PZI. These have a much more pronounced peak and longer duration.
The side-effects of Lantus can take up to 18 months to exhibit themselves, as Jopar said; for some people lantus can appear to be giving great control at first, then things go a bit crazy. Give the IDDT a ring for further advice. http://www.iddt.org/ They can tell you all you need to know about insulins.
I hope you find the right insulin to give you optimum control without the grotty side effects. You don't need to feel ill & tired, especailly if it's insulin related. Here's a link you might find interesting http://www.mindfully.org/GE/Diabetics-Not-Told.htm Also take a look at the "Lantus Problems" thread viewtopic.php?f=26&t=2797
Jus

 

[kewgirl]

Hi Richie

Welcome to the forum.

There are a several issues to consider.

The dawn phenomenon (DP) which jopar mentioned in her post is the body’s response to hormones released in the early morning hours and is one of the curses of being a Type 1 diabetic – research suggests that 75% of Type 1 diabetics suffer from it & it’s a real pain in the butt :roll: – you get really good blood glucose levels the rest of the day but the waking blood glucose level is a night mare.

There are differing recommendations on how to deal with the dawn phenomenon and it’s generally a case of trying something then evaluating whether it works for you or not.

What time do you take your Insuman as sometimes the time its injected can have a bearing on morning blood glucose levels.

Your bedtime blood glucose level can affect DP – I know DAPHNE recommend bedtime blood glucose of 6.5-8.5mmols but this is a very individual thing. If your DP is very strong then it is possible to have a bedtime BG of lower and remain safe that nocturnal hypo will not occur.

Exercise later in the day or evening if able.

Bedtime snack – limit carbohydrates & try a more protein/fat type of snack (nuts, peanut butter, cheese, or meat) can help.

The other vital thing to remember is if you suffer from the dawn phenomenon it is vital to eat breakfast – as carbohydrate from food actually stops the continual rise in blood glucose levels. Without breakfast it is common for blood glucose to continue rising until 11am even 12 noon.
This process is apparently left over from cave person days when our bodies needed enough glucose to go out and slay a woolly mammoth :shock: – not sure how many mammoths are roaming around ready to be slain for eating by diabetics but you never know. :lol: :lol:

John Walsh’s Using Insulin recommends increasing your basal insulin by one unit every three or four days until either your morning readings come down or you begin to have night lows.

Another option but it does involve another injection is using a few units of Bovine (Beef) Lente at bedtime unfortunately it’s the only Lente insulin left/available in the UK.
I take Porcine Isophane at 10pm and then before bed a few units of Bovine Lente and its helped curb my very pronounced DP – a big thank you to John Walsh’s Using Insulin Book for recommending this cos my diabetes consultant had not a clue!! :roll:

As janabelle has posted Insuman insulin may not be the best choice of insulin particularly if you suffer a pronounced DP.
There is the alternative basal analogue insulin to Lantus and that is Levemir (Insulin Detemir) – again works well for some users and not others.

Unfortunately it will be a case of trying a variety of insulin’s be it animal, and/or human synthetic and/or analogue insulin until you get the right combination – its not an exact science – sorry.

But the most important thing is that you should not be feeling unwell on insulin – insulin must provide you with a quality of life as well as optimising blood glucose levels.

Hope you get things sorted.

Best wishes

Txx

 

[richie67]

Thank you for all your advice and guidance!!

I have an appointment tomorrow with my G.P and will express my concerns over my current insulin and a move to animal. The switch to Insuman made no difference to any of the symptoms I have been feeling or improved my waking BG . But from all I have read (thank you for the links ) I seriously doubt it would have!!! Although now looking back I am glad I have been taken off Lantus, it really does seem of questionable medical value with its side effects!!!

In regard to DP, I will admit it was not something I had considered. I initially thought that the cause of feeling unwell may have been due to nocturnal hypo's as the rebound would explain the highs. The problem was both the symptoms and the morning highs manifested themselves at the same time. But at the magical number of 3.8 I always suffer Hypo symptoms (fortunate I know) that will wake me, so could fairly reliably discount them. DP does seem to be the cause of my morning highs, strange though as it seems to have started out of the blue!!! At least I can move on and identify ways to combat its effects and bring my HbA1c down lower!!

Thank you once again for the guidance, although I was saddened to hear of the problems of so many others Diabetics at least I now know that I am not alone!!!

Richie

 

[RichardFromHampshire]

Hi Richie

My own experience with the Dawn Phenomenon started about 2 years ago after approx 12 months' on Lantus. I was so frustrated that I could go to bed with a good BG of 6, not have a night-time hypo, and yet still wake up in the morning with a BG of 16 or more! What was even more frustrating was that my diabetes team all drew blank faces when I discussed this with them - they had not a clue about DS.

Anyway, I've since moved on to a pump (partly for the DS and also because of ballooning weight) and, whilst still very early days, in the last week I have had one reading of 13.3, one of 10, and all the rest within a normal range of 5-8 in the morning. I am over the moon with the pump! First time in 22 years when I haven't had to constantly inject myself either.

If possible, i would ask about the availability of a pump.

Best regards

Richard

 

[Curleous]

Hi All
quick update for you..
I saw the consultant last week and explained the problems and he said he would be suprised if it was the lantus causing the problems. He said that if i really wanted he would change me to levemir but he would like me to see the dietician and have some blood taken first.

Bloods back and hb1ac now 4.4 ....!!!!!!
no feedback from diabetes clinic or surgery....what do i do now?
i have no appointment fo another 3 months..

Cheers
Curleous

 

[noblehead]

Hi Curleous,

Have you been checked for other conditions that may be causing the aching joints, it may well not be the lantus, although as people have stated it can cause these symptoms in some users.

I don't see any reasons why you can't change insulins, it may well effect your excellent control in the short-term, but I am sure this will be something easily overcome, and should your condition not improve and you wish to change back, so-be-it. Good luck in whatever decision you make!

Nigel

 

[janabelle]

Hi Curleous
Your Hba1c is excellent, not many type-1s achieve that, but if you can manage that on Lantus, I daresay you could do just as well on another insulin. If you are still suffering joint pain and other frequently reported side-effects caused by Lantus and other analogues, I would recommend you think seriously about changing insulins. I am infuriated by how I, and many other patients are treated when reporting such problems to diabetes "specialists". Surely their responsiblilty is to the patient and not to the drug companies??!!!
As I've said previously, I spent over 4 years trying to find the cause of my deteriorating health, and how much that cost the NHS is anybody's guess. In that time I was referred to a Rheumatologist at my local hospital, then a Fibromyalgia specialist at Guys Hospital; a heart specialist at my local hospital, then a heart specialist at Barts Hospital where I underwent many tests; after numerous appointments at my local diabetes clinic including the diabetes consultant, I was then referred to an endocrinologist and had a cortisol test, which needed a nurse and doctor to perform and supervise; also a gastroenterologist. Not to mention the many many fruitless GP appointments and a very expensive, and again fruitless appointment with a diabetes specialist at a private hospital :evil:
If only ONE of these doctors had made the link with any one of my symptoms and Lantus, it could have saved me and my family the distress and worry and the NHS the expense.
Taking in to account that analogue insulins are the most expensive on the market, and side-effects of synthetic insulins have been known by the medical profession and Diabetes UK for over 25 years , I find the attitude of many doctors utterly infuriating and downright irresponsible :evil: There are other long acting insulins besides Lantus and Levemir-so why do docs only pedal these ones? Especially as the long-term safety of them is completely unknown?
Doctors should take responsiblilty for the decisions they make, the information is out there, so ignorance is no defence :twisted:
We are being hood-winked, and my real concern is that such side-effects will soon be considered "normal" for diabetics on insulin, and that's scary.
Of course your aches and pains may have another origin, but I very much doubt it. Other analogues can also cause joint/muscle pain; recently forum member Nannybarbara found Humalog to be the cause of hers, and only coming off these insulins will show whether they are causing your problems.
It's natural to trust "experts" but as Kewgirl said, I doubt many of these people have actually taken analogue insulins! Unfortuately it's us,the patients who are the ginuea pigs and long-term safety studies; and don't underestimate how valuable that information is to pharmaceutical companies, and how hard the will try to ensure patients remain on them, whatever the cost. I discovered that my diabetes consultant had lied in my hospital notes and said I was doing well on Lantus- a formal complaint ensured that my notes were amended.
If you suspect there's a relationship between your ailments and your medication, you should be offered the chance to change. Your doctor may be reluctant as your Hba1c is so good, but your quality of life is more important than target Hba1c results, and he should be listening and taking seriously your concerns.
See how you go and do some more research, and best of luck in making a decision; just make sure it's yours.
Jus

 

[sf352]

Hi, not sure if this is the right thread but I'm new so be gentle! I was diagnosed as type 1 last week after months of being told I was type 2 and that a max dose of glycazide wasn't bringing down my sugars cause my diet was poor. Cue a new GP and appt with endocrinologist within 2 days, and hey presto type 1. I've been started on 10 lantus once a day at 18:00 and 10 novorapid 3 times, once with each meal and 3 units if I'm having a snack. I stumbles across this thread while looking for general info and am just curious as to if I should be concerned about being on Lantus?? Am 29 and havent had a mmol readng of below 10 in 6 months. Average of 14-17 but was don to 10 after 1st lantus dose and 11-13 after meals with novorapid. Usually mid 20's after meals. Any help/hints/comments would be greatly appreciated, sorry again if this is the wrong thread.

Simon.

 

[sasha1]

Hi All ..

Firstly I would like to say sorry, as I dont often post, but read all threads, especially linked to Lantus.

If I can just give you a little background on my own experiences with Lantus .. It is my son who is type1, diagnosed feb 07 aged 11 and now 15. Originally he was put on MDI of NovaRapid and Levemir for the first 12mts and then swapped to Lantus.. as the Levemir was'nt working as it should and having to take increasing doses of it to get anywhere near acceptable levels. So the consultant and DSN recommended Lantus .... .. If only I knew what I do now. Anyway originally I couldnt fault it. levels were great etc .. then approximately after 18mts of using it problems arose .... more and more was needed, tired, painful joints, loss of hypo awareness, readings swinging all over, 2 1/2 stone weight gain .. the list goes on ... So armed with my computer I decided to do some serious research on Lantus ... the final straw for me was 4mths ago the team decided to put him on a ridiculous dose of Metformin and also told me he was also type2 diabetic .. some may know this a double diabetes ..

Armed with my research .. I challenged the consultant several times over the past few months .. to the point I finally got them to agree to change him to Porcine Neutral and Isophane ... the transition from gm/analogues .. to animal insulin happened 3 weeks ago ... and my god I wish it had happened 2 years ago ..... He has reduced massively the amounts of insulin he requires, feels great, looks a **** site better .. and has lost 5lbs .. and now starting to take him off the metformin ... In the past 3 weeks he has has 1 hypo as apposed to 1 a day approx on the other stuff.

I would like to go into to this further but I feel it is maybe not the right place .. But if I could say one thing take a look at www.iddtinternational.org ... Where you can make an informed decision for yourselves .. rather than consultant and team decide..

Hope this helps..

Heidi
xx

 

[janabelle]

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