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LANTUS USERS - PROBLEMS

Re: LANTUS PROBLEMS

Hi there - hope that you are all well.

I'm new to LANTUS yesterday & have been switched over from using LEVEMIR on the advice of TWO DSNs. I was using Levemir for about 15 months and had no problems with it IMHO, apart from high bgs after coming off the low carb diet during the last winter. METFORMIN was also suggested but it made me so ill all the time I flatly rejected the proposal.

I'm a bit shocked to read of all these LANTUS problems, as it has been "sold" to me as a better option for control. I'll be monitoring my overall health and will have no hesitation in seeking a working solution - it is after all my health and not the NHS.

Onwards and upwards !!

Pete
 
Re: LANTUS PROBLEMS

y
 
Re: LANTUS PROBLEMS


Hi Pete,

As CarbsRok has written, there are many underlining problems with Lantus & I agree.
For you to change from Levimer to Lantus, personally was a poor decision.
I wouldn't mind betting that your DSN or consultant wasn't willing to work with you.

If you want my honest advice....... please rethink your decision & ask for an alternative insulin. It could be something silly like CarbsRok has suggested. Just by doing one simple thing on your old regime, can drastically improve your overall control, without having to start all over again on a new insulin that is more than likely guaranteed to give you bigger problems 2 -3 years down the line.

One other thing, please keep an eye on your weight...... I put on over 2 1/2 Stone after starting with Lantus!

Let us all know how you get on & progress.

Steve :mrgreen:
 
Re: LANTUS PROBLEMS

Can i have a wee moan?

Went to see diabetic nurse yesterday and told her my doctor in holland switched me to Insulatard the other day. She seemed all disappointed and said i wish you had trusted me.. Then i explaned to her i couldn't wait till my next apointment in August to get off the Lantus so that's why i asked for help in Holland as there are not long waiting lists there like in Britain. I explained to her it' s not because i didn't trust her, i simply couldn't wait that long,

She seemed so insulted, she said we wanted to put you on Levimir (even though i told her previously i had already tried that and i felt ill on that too) and then she went on to say how Insulatard is actually an old insulin too and they'd rather have patients stop using it. I then asked her for advice as even though i feel a hell of a lot better on Insulatard i do have some hypo's and need advice on how to correct them. She said well i'm not going to give you advice seeing you got that insulin in Holland you should ask for advic there. I realized her ego got in the way of trying to get the best outcome for me so i just said ok and left..

Are we fighting a losing bottle against the physicians, diabetic nurses and pharmaceutical industry? I'm starting to feel that what would be best for us is not their concern.......
 
Re: LANTUS PROBLEMS

Hi Jan
Your DSN needs a formal complaint made against her for her improper conduct, neglecting your care twice. Does she refuse to treat all patients who disagree with her??
re-your last comment; seems that way :evil:
Meanwhile take a look at this link about The new NHS Constitution http://www.which.co.uk/advice/how-to-co ... /index.jsp You are within your rights to refuse suggested treatment, and still receive care from your DSN. You also have the right to be prescribed animal insulin if that's the insulin you choose.
When are you having hypo problems with insulatard? I was on it for about 10 years, so might be able to help with that.
Jus x
 
Re: LANTUS PROBLEMS

y
 
Re: LANTUS PROBLEMS

Thanks again for the support guys, really means a lot..

I've decided to see my gp this week and i'll ask to be transferred to another hospital. Luckily there is a hospital closer to where i stay so i have a good excuse to ask. I also wanted to ask the nurse if there was any way they could still test my blood to see how my kidneys are doing but i was too scared to ask. I really don't want to wait till the end of august to get my blood tested so hopefully my gp can test it for me. I'm considering putting in a complaint, where can you do that?

Jus, i'm currently injecing 8 units of Insulatard at 12 pm and another 8 at 12 am but get hypo's about 4 hours after injecting. I just wonder if i should keep decreasing the amount of insulatard like i had to do with the Lantus (but the peaks stayed). How are you getting on with your heart problems you mentioned a wee while ago? Did your doctor find out what was causing it?

Jan.x
 
Re: LANTUS PROBLEMS

Hi Jan,
Take a look at the link in my previous post-it tells you exactly how to go about making a formal complaint. I know it's a time-consuming tedious process, but hopefully you'll get some satisfaction from doing it, and it will possibly prevent other patients from being treated in such an appalling way.
I went to the heart specialist on Tues, thanks for asking He grinned at me gormlessly and assured me the missed/extra beats are nothing dangerous and quite normal. "QUITE NORMAL" i shouted at him :evil: I'm not convinced. He was in a hurry, couldn't get me out of the room quick enough, and immediately took off in his car after the consultation. I had no time to ask questions and don't know if he's discharged me-you might not be the only one complaining this week!
Re- Insulatard and hypos; I can't remember what doses I was on, but I'm sure it was an unequal split; taken bout 8 am and 8 pm. I took a larger dose in the morning as it covered me during the day, and less at night. I've got an old monitoring diary in the house somewhere, I'll rake it out and check the ratios. Are you having the hypos after both doses?
Great you're feeling better, but all this hassle must be getting you down- it shouldn't have to be this way.
Jus x
 
Re: LANTUS PROBLEMS

Hi Janna

Re your trouble getting up in the morning - have you considered you may be going hypo around then? When I have one in the morning I am absolutely exhausted (as opposed to usual semi-exhaustion). I haven't been on insulatard for about 20 years but it worked more or less the same as the animal in terms of dosage. Can I ask why you inject at midday and midnight? Aside from disrupting your sleep if you have a normal day then the usual practice is you take less insulatard at night than at day because you will not eat then but I'm not sure how that would work with your schedule.

Good luck in finding a better doctor.
 
Re: LANTUS PROBLEMS

Pete, How were you using the Levemir?

A single dose last thing at night. Suits my very active lifestyle.
 
Re: LANTUS PROBLEMS


Hi Steve - many thanks for that advice.
I'm just starting back on the low carb diet again and the exercise regime will be kicking in today.
I'm monitoring twice daily and as a business intelligence practitioner will be charting all the bgs adn weight and miles travelled etc for further analysis. My first 6 months with Levemir was v.good, only during this winter I put in the weight which I had lost originally. Think this summers target will be two stone off instead of one...... B-)

best regards

Pete
 
Re: LANTUS PROBLEMS

I know that you have heard this all before but I have just found this forum and boy am I glad that I have. I have just asked my GP to refer me back the the Hospital regarding my Diabetes. I am type 2 and about 3 years ago my GP talked me into leaving tablets only and going onto insulin. Yes you have guessed it Lantus.That GP has since left the surgery and because I have been feeling more and more unwell I decided enough was enough. My problems started some 3 weeks after starting with Lantus. I have been back to the GP various times only to be told that I was suffering from the male menopause.I have always felt unwell, very lethargic. If I sit for about 30 minutes I will fall asleep, I am getting forgetful and depressed, I lack concentration and have aching limbs. Having no energy is really depressing, along with sweating excessively especially in bed. I can wake up in the night and it is as though I have just got out of the shower. I have to buy a new pillow every month. One of the worst parts is that I have to ensure that my blood sugar is at least 11 before I go to bed if not I will have a hypo at about 03:30 (down to lower 3's or 2's). I inject 38 units of Lanuts first thing every morning. Along with taking Gliclazide and Metformin. One of the worst problems is the internal shaking. The only way that I can describe this is if you ride on a very fast roller coaster. The feeling you get as your internals are thrown about is the feeling I get somedays. It used to last about and hour, now it can last 2 or 3 days and has expanded to include my arms and legs. I have tried Novomix 60 but I could not control my blood sugars using it, they never came below 15. I would like to thank everyone who has written on this forum becasue now I know that I am not going out of my mind.

Andy K
 
Re: LANTUS PROBLEMS

Hi Andy,
I, too, am glad you found this forum and that you're not going out of your mind
That "internal shaking" feeling you are experiencing sounds familiar :cry: . I felt like I was going to have a fit, not that I've ever had a fit, but what I imagine it would feel like.
Please report your side-effects through the MHRA Yellow Card Scheme, you can do it on their website-I know I've said all this before but worth repeating. Here's the Website link http://yellowcard.mhra.gov.uk/
Are you planning a change to animal insulin? If so, there's plenty of people on this forum to advise you. You should contact the IDDT (insulin dependent diabetes trust) for support, they're a friendly bunch. Phone number's on the website- http://www.iddt.org/
You're not alone, there's loads of us who've suffered side-effects not just on lantus, but other insulins too. It might be worth printing some stuff of the internet and this forum to show your doctor, to support your suspicion. You've sussed out what the problem is, but don't expect that your doc will believe you or take it seriously;unfortunately many dont :evil:
I hope you're off lantus and feeling better soon, and a very warm welcome to the forum
feel free to PM me
Jus x
 
Re: LANTUS PROBLEMS

Hi All,

I thought i would give an update to my progress here......

Well, it has been 6 months since coming off Lantus & NovoRapid and transferring onto Hypurin Porcine Isophane & Neutral Animal Insulins.

Many things have changed in my life over this period of time....

7 weeks after transferring to Animal Insulin, I lost nearly 1 1/2 Stone! I did get this checked out & did some research myself & it was a very high probability down to Water Retention.
I am not confused any more, which is lovely
I am not dependant on Lucozades any more... Going from spending nearly £15 a week on them, when using the old insulins, I am lucky now, if I spend £1.50 a week!
HBA1C Readings are much better... lower than using the previous insulins BUT without the continuous "freaky" hypo's all the time.
It is the best I have felt physically now, for the last 15+ years.

One other observation i have found is that when i was using the old insulin & i would get stressed, it would have a high tendancy to drop my Blood Glucose levels!
With using the Animal Insulin, it is the total opposite, they run higher as your bodies metabolism slows down, due to the stress!
SO MANY people have commented on the positive changes & I for one,are over the moon with the results.

It just goes to show, that I was not compatible with Human Insulins, like others & there MUST be this need to have Animal Insulins readily available for people with such cases ?!?!?

Speak soon

Take care all.

Steve :mrgreen: :mrgreen:
 
Re: LANTUS PROBLEMS

Hi,
Found this earlier today, and posted it elsewhere on the forum. Wanted to put it in it's rightful place, for anyone on Lantus to read. Can't put it as a clickable link, but you can copy and paste it into your web browser.
medications.com/se/lantus
Jus
 
Re: LANTUS PROBLEMS

I have been experiencing problems with Lantus Glargine.. Although I have used it for several years without problem, I recently started to get get hypos. Because I was taking it just before bed the hypos were occuring when I was asleep, so I was unable to take action. Unfortunately when I do wake up I am very aggressive and my wife has difficulty getting me to take glucose. Things came to a head 2 weeks ago, after 4 hypos in a week my wife rang the ambulance. They could here me in the background and they called the police.

The ambulance took me to Gloucester hospital, and said diabetic specilaist would sort me out. Basically I was told to reduce my dose from 55 to 40 and take it before my evening meal, and made an appointment for me to see diabetic nurse at my local surgery.

Having lost confidence in Lantus I took 35 instead of the recommended 40. I was a bit worried about taking even 35, but as I my blood sugar level was 21 I thought it would be OK. In the morming I was down to 16. However my concern is that if my blood sugar level is where it should be i.e. between 4 & 8, then even 35 of Lantus is going to cause a hypo?

Saw my GP and he said reduce Lantus to 20 initially & continue to take before evening meal. I won't bore you with my blood glucose levels since then, but they are generally in high 20s or off the scale. I am as at today back on 40 of Lantus, & today my readings are between 11 and 24.

Basically I have lost confidence in Lantus. Nobody has been able to explain why it suddenly caused hypos. Instead of drip feeding the insulin steadily over 24 hours, it suddenly appears to have rushed in over 4-7 hours. As far as I can make out it seems to have stopped rushing in, but does not appear to be steadily feeding in over 24 hours either. My blood sugar levels have been generally high now for 2 weeks. GP told me to keep a record of my blood sugar levels and the amount of insuin I have taken. Saw him 2 days ago and he (presumably realising he does not have sufficient knowledge) has asked a diabetic specialist to ring me. I know its the NHS but I am still waiting.

I also take Lipso 3 times daily before every meal, and I have been using this more aggressively to try and keep my sugar levels down. Whereas I used to take maybe 8-12 before breakfast I now take 35. I have had to give myself an extra 10 in between meals to bring it down, although I haven't done that since I increased the Lantus back to 40.

Original symptons have returned i.e weight loss, raging thirst and trips to the loo. I am supposed to be going on holiday to Florida in 3 weeks & I need to get this sorted!

Sorry to be a bore, but anybody had similar experience or solutions
 
Re: LANTUS PROBLEMS

Hi Pete,
it's clear that Lantus is not working, for whatever reason, and you need a basal that does it's job. Can you see your doc before you go on your hols? There are plenty of long-acting insulins available, not just Lantus and Levemir; the former being the cause of similar probs in many people. There are human synthetic varieties and my fave animal insulin-the real deal!

I am concerned that you are taking such a large amount of Humalog, 35 units is a HUGE amount, I once got my Lantus and Humalog confused(they were both in purple vials and clear!) and injected 28 units of Humalog-resulting in a day in casualty on a glucose drip-very scary at the time.
The reason I'm concerned about your high Humalog dose is that your Lantus may not work for a few days, but it might kick-in again in a few days and this could leave you in a dangerous situation. I remember reading somewhere on the internet that a study showed that a high percentage of Lantus can remain in the injection site for up to 36 hours, which could explain why it works some days and not others-wish I could find that info now, but didn't save the link . the reason for this is likely the acidity of Lantus (ph 4) and the way it's released-unpredictable to say the least.

had the experience of high BGs for days and days when I would be hypo all day for no apparent reason with lows of 2.6 with NO humalog and stuffing my face with carbs! No rhyme or reason to it, only coming off it proved it was at fault, and hearing others' stories. It was the unexplained hypos that alerted me to the other side-effects lantus was causing, and it was a real wake-up call.

Have you contacted the IDDT (insulin dependent diabetes trust)? you can get some helpful info from them, give them a call. Number's on the website, here's a link http://www.iddt.org/
Sorry can't be of more help, best of luck and keep us posted
Jus

ps You're not a bore! Though I could be considered a Lantus bore :lol: , it's with good reason and if I ever stop posting about this subject, presume I'm dead!
 
Re: LANTUS PROBLEMS

Hello & thanks for your help. I have now seen a diabtetic 'expert'. It turns out that ihe the Lantus Glargine was not at fault. The problem was with the quick acting Humalog. I was injecting too much in the stomach area, causing a build up of fatty substance, which delayed the effect of the Humalog (by biggest intake was before my evening meal). This in turn was causing the hypos at night. I am now taking 25 Lantus before breakfast and Humalog 8-10 @ breakfast, 16-18 @ lunch and 25 @ evening meal. I have still some tweaking to do, but it seems to be working and I have not suffered anymore hypos!!
 
Re: LANTUS PROBLEMS

After reading some of the other posts on here, I am extremely worried.
I too am on Lantus and Humalog.
At the moment, I am injecing 20 units humalog at breakfast, 35 for lunch, 65 units before evening meal. Then followed by 50 units of Lantus at 10.30pm.

Clearly, there is something wrong. :cry:

I'm a fairly large chap, so my DSN and Diabetic Consultant both say that the amounts I inject are normal.

I have noticed a steady increase in the amount of units I inject, and to add insult to injury my weight is also rising.

Do any of you think that there may be a more effective set of insulins which I could move on to?

One other thing my GP had suggested was to put me on Metformin tablets as well.
This is not possible, due to the fact that when I was first diagnosed I was on the dreaded Metformin.
Essentially, it didn't agree with me - and I ended up in hospital for a week. Not good.

Any suggestions or insights would be very gratefully received.

Adam
 
Re: LANTUS PROBLEMS

What can I say.. I've been a Type 1 Diabetic for 30yrs and have tried pretty much everything out there from an insulin point of view.

I was on Lantus and NovoRapid for several years and had all the yo yo effects described.
Point 1 NovoRapid is not great for people who process carbs quick.... it's peak for me 1 3-4 hours... I'm now on Apidra which peaks at 2-3.

Lantus.... it just didn't work, I had the days when you can't get it off the floor and days when you see a 12 , put 2 units of fast acting in, see 11.6 3hrs later put another 2 units of fast acting in... wake up in the morning... 13.... It makes no sense...

I'm now on a split levamir dose... I see the issue less, but its still there...the conclusion I have is that its actually a digestive problem... I believe that on certain days your body just decides not to work as effectively as it could... it then drags out the digestive process over 5-6 hours rather than 3-4... this usually ties in with a fealing of indigestion.

Be aware that most of these "long acting" insulins are totally dependent on volume injected/weight and location. I had a graph of the absorption rate of Levamir, it shows that a dose of 10 units/70kg burns out in 16hrs.. and location of course... if you put it somewhere in a muscle group which moves a lot, the insulin take up will be quicker, if you're not as active or you put it in an area with little movement, it will take your body longer to fully absorb it.
 
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