LANTUS USERS - PROBLEMS

[janabelle]

Re: Lantus problems

Richard, it is not you! Read this whole thread and rethink.
I'd bet my house, and all my wordly goods that if you changed from Lantus to ANY other basal insulin, you would not have these problems!
Jus

 

[tigger]

Re: Lantus problems

Hi Megan,

Hypurin are the makers of the animal insulins. They do bovine and porcine. I've always been on porcine with an injecting regime so can't really comment on which is better but got pmd by someone else to say he was on bovine on a pump. What is your current regime and what do you feel suits your lifestyle best? Animal insulins are like the older human ones so it's a straight translation from these. When I switched many years ago the quantities remained the same.

If your GP isn't experienced in this get a consultant appointment. Or feel free to post here and I'm sure people can advise you.

To give an idea my regime on lowish carbs is
morning 12 isophane 9 neutral (oats and hot water for breakfast)
evening 20 neutral (about 40g carb for supper
bed 9 isophane and if high add a little neutral

If I want a higher carb day I increase the morning isophane or consider adding some neutral before lunch.

 

[DiabeticVeteran]

Re: Lantus problems

Richard, it is not you! Read this whole thread and rethink.
I'd bet my house, and all my wordly goods that if you changed from Lantus to ANY other basal insulin, you would not have these problems!
Jus

Hi All,

From what I have read, I have had the same experiences over the last 7 years with Lantus but over a really slow depreciation in my health.
Everything that has been stated, Ive had & tbh, I never thought it would be down to the insulin. My Consultant told me back in late 2002, just as he put me on Lantus, "This is a new insulin that will control & stop the amount of hypos you will have" As i was experencing some problems before.

Well 13 months after, I put 2 stone on in weight & started getting more irritable.......Then more really bad hypo's started happening which unfortunatley resulted me by not being in control & having the tendancy to latch out, mainly at the person that I loved more than anything!!

Now I have been on Animal insulin for 1 month & already myself & friends have noticed substanial differences with me, a few of them being, losing weight, my hair is thicker , I have colour in my face & I have a calmer attitude! Also the hypos have dropped right off!
The only people that dont know is my wife, my sons & my immediate family.

Something should be done now to ban this Insulin......Looks like everyone here & possibly many others that have not posted, have had life changing problems.

Speak soon,

Steve

 

[janabelle]

Re: Lantus problems

Steve,
I'm pleased that you're health is improving, despite your difficult situation.
I totally agree with you,I think Lantus should be taken off the market. The worrying thing is that it appears to have a cumulative effect; patients can be on it for years before adverse effects reach a peak. Also people appear to be well controlled to begin with, so when things go awry, they don't suspect Lantus. I believe it's faulty, dangerous and it's ruining people's lives, your story is one of many. If you haven't already, please contact the IDDT, they may be able to help you with your predicament. It might help your case to compile evidence of other people's experiences.
It was bad enough that patients were hoodwinked when "human insulin" was forced on them; http://www.mindfully.org/GE/Diabetics-Not-Told.htm ,now it's analogues. These insulins are NOT the best thing since sliced bread :evil:
Jus

 

[Janna]

Re: Lantus problems

Hi guys,

So happy i found this tread.... I've been on Lantus for years and switched to Levemir for a wee while too. I've been feeling ill for all those years, symptoms that doctor's just didn't take serious. I tried to explain that feeling of having poison in my brains, especially in the mornings, but they'd just look at me as if i was imagining it. My belly swells up so bad i don't fit my clothes half of the time and i retain a lot of fluid and my face looks puffy, even though i'm not overweight. The brain fog and memory problems is driving me nuts too, i'm a student and it's very hard to concentrate in class, if i even made it to the class in the first place as it takes me hours to get my head together and feel well enough to face the day. I just feel i've not been functioning for all those years. One day the Lantus gets a peak after 5 hours of injecting, the next day i'm waiting for it to come with my chocolate bar ready for the expected hypo and it doesn't come. One day it seems to work for 18 hours, the next not even for 12 hours and i get that 'keto' feeling. It's like Janabelle described a constant up and down of bloodsugar levels but because my hba1c have not been too bad the doctor's assume i'm doing ok.

Things came to blows the other day when i had drank way too much wine with my friends and got all emotional. I started crying in the middle of the pub telling the people around me that i can't handle life as a diabetic anymore. Oops, embarrassing :/ We laughed about it the next day as it was actually quite a funny situation but it did't came out of nowhere. All my built up frustration somehow came out that day.

It got me to search the internet though for Lantus problems so now i'm glad it happened, or i may never have found this tread..

I'm going to ask my doctor to put me on animal insulin, fingers crossed he'll be willing to cooperate. Will keep yous posted!

Jan.x

 

[donnellysdogs]

Re: Lantus problems

I have been on Lantus for years. Consultant and GP's would never let me change from night dosing myself. I have had chronic hypo's at night for as long as I remember..........................I changed the does from 31 at night to 21 in the morning (being active during the day), I have now cut the dosage down to 18 in the morning. My night hypo's have gone, and I can watch myself during the day.

The drug that was killing me was the statins. I have also stopped taking them. I was only put on them because I am diabetic-not because of bad cholesterol. They were absolutely killing me. Glad to see they have been forced to change their side effect warnings now to include memory loss, sleeplessness and depression. I am very wary of blaming everything on lantus.

 

[janabelle]

Re: Lantus problems

Donnellydogs
You are lucky not to suffer the afore-mentioned Lantus side-effects. The effects of statins you suffered sound pretty ghastly too.

I really wish I could understand why some people do and some people don't have these probs with Lantus. Maybe you can help with that. Lots of people must be ok on it, and having good control as it's so widely prescribed, so it really is a puzzle.

I'm not anti new medications but I have genuine concerns about Lantus. I spoke to a doctor recently who informed me that most of the type-1 she has come into contact with have also got fibromyalgia. They may well have fibromyalgia, but symptoms are identical to Lantus side-effects reported by many people, including me. I was mis-diagnosed with fibromyalgia. :?
I'd appreciate your input
Jus

 

[DiabeticVeteran]

Re: Lantus problems

Steve,
I'm pleased that you're health is improving, despite your difficult situation.
I totally agree with you,I think Lantus should be taken off the market. The worrying thing is that it appears to have a cumulative effect; patients can be on it for years before adverse effects reach a peak. Also people appear to be well controlled to begin with, so when things go awry, they don't suspect Lantus. I believe it's faulty, dangerous and it's ruining people's lives, your story is one of many. If you haven't already, please contact the IDDT, they may be able to help you with your predicament. It might help your case to compile evidence of other people's experiences.
It was bad enough that patients were hoodwinked when "human insulin" was forced on them; http://www.mindfully.org/GE/Diabetics-Not-Told.htm ,now it's analogues. These insulins are NOT the best thing since sliced bread :evil:
Jus

Hi Jus,

I am in total agreement with you regarding the cumalative effects, I was on this Cr*p for 7 years till it come to a massive head.

In terms of Control with Lantus, over the years, my consultant & of course the lovely Jenny from the IDDT, noticed I had very tight control with regards to my BG levels which resulted in "No Lower Window", basically, on the verge of Hypo's all the time. It was expressed to my previous consultants regarding this but again, I got the reply "You seem to be doing ok, just try adjusting your dosages!" Tw*t!

Why do these so called experts love messing around with our live's & not respect our concerns, till its too late??
On saying that now, Since moving to Stafford from London, my new Diabetes health care team are brilliant!

I have been in contact with Jenny from the IDDT & what she told me about the changes I would recieve from changing from Human to Animal Insulin have come true.
Although, using Animal insulin to treat the Diabetes, we all know it is a natural product which has been filtered to take out the impurities........
......With Human Synthetics & Analogues, it is a GM drug & this a very big concern due to the lack of testing, research & sheer ignorance to the effects its has on us as Diabetics! :evil:

One of the biggest things that have been noticed over the last month by myself & from other people is:
Lost weight.... must be nearly 2 stone now BUT keeping my definition
I have colour now & skin complextion is better!!!! Not pasty looking anymore
My hair is thicker
Not confused or frustrated anymore
Calmer
Getting more motivated considering the current stresses I am going through!

If this is going from being on Animal Insulin for ONE month, Goodness knows what further changes am going to expect in the future!!!

One final thing, as this has effected so many life's, I really need more evidence to this to help me convince others it was this problem that caused everything & to help me with the problem I am going through at present! How could I acheive this?, Any ideas please??
I do not need to convince myself anymore, as I have stated the above.

Cheers for reading,

Regards,

Steve :mrgreen:

 

[lauren_xx]

Re: LANTUS PROBLEMS

I was diagnosed with type 1 diabetes wen I was 6yrs old, I am now 21yrs old. I was changed over to Lantus 4years ago, and from then my blood sugars have become uncontrollable! For the last 3yrs I have been in and out of hospital upto 7-8times a year. Everything that has been stated on this site, Ive had & to be honest, I never thought it would be down to the insulin.

Ive had aches and pains all over me, constantly tired, feeling sick, swelling off my stomach which makes me looks 6months pregnant (as I am of a slight build)! Ive had ultrasound scans, mri and ct scans, x-rays, blood tests, everything thats possible and nothing has been found! Up until I found this site, I had convinced myself that everyone thought I was making it all up and that it was my imagination running away with itself.

I have just been discharged from hospital after another DKA episode, and am now awaiting an appointment to see my consultant and diabetic specialist nurse, wen I receive it, I will take information with me and put to them that I want to be changed to animal insulin! I feel frustrated, angry, upset, worthless, empty, I feel I am not living my life the way I should be, sometimes I think of ending it all, smetimes I dont see even a flicker of light at the end of the tunnel. As nothing is being done to help me maintain control of my blood sugars, I have days were I dont move out of my bed, I shut myself of from the world, I have been prescribed anti-depressants because of this, tho I found them no help to be honest. I put a brave face on and tell everyone Im coping fine, but when it gets to much, I get really down and kinda give up. I think to myself whats the point?

My blood sugars range from 1.2 to HI, meaning its higher than 33. they have been as high as 45 (on my last hospital admittance), I was unconcious, but was discharged 2 days later. I have lost faith in the doctors and hospital as they no longer give me the advice, help, and support I need. I now feel after finding this site, that I am not alone, its gave me a bit of hope, that there is light at the end of this dark, dark tunnel! If anyone wants a chat or anything dont hesitate. Please keep your chins up everyone! Tc, Ill post again soon xxx

 

[janabelle]

Re: LANTUS PROBLEMS

Lauren,
I'm so glad you found this site too-you've been through a **** time like a lot of us, and it's awful that you've had to go through all that. I never thought my probs were related to Lantus for 4 1/2 years, and like you, am angry that i got fobbed off by diabetes speccialists; 3 diabetes consultants!!!!
I never had an inkling in all that time, and I'm bl******y fuming about till this day. Well done you for sussing it out- what made you think it was Lantus related?

Please report the problems you've had with Lantus to the MHRA, here's a link - http://yellowcard.mhra.gov.uk/
You'll be helping others by doing this, and ensuring Lantus (glargine) stays closely monitored.

I wish this thread was permanently at the top of the type-1 section, it's clearly needed!!!!

Lauren, if you need any support or help approaching your doc, don't hesitate to ask. There's a lot of us been in the same boat: don't take no for an answer :evil: .
There is light at the end of the tunnel, and you will feel better I promise.
My thoughts are with you, and please don't consider giving up- my husband's just read your post, and said you sound just like I was, so I'm sending a hug from both of us
Jus x

 

[ro6ert2]

Re: LANTUS PROBLEMS

Hi all, have been on metformin for ten years, 3 months ago it was stopped because it was affecting my liver enzimes. I was put on lantis have found I get pains in my feet and joints and a general feeling of being unwell and have put weight on that i didn't need nearly a stone in 3 months having to go to slimmers world to try to lose it. Would love to change to something else but they say its to early to change and to give it a chance. Have not changed the food I normaly eat yet I'm getting bigger

 

[janabelle]

Re: LANTUS PROBLEMS

Hi Ro6ert2,
If you are convinced that your problems are related to Lantus, you should go back to your doc and demand you have your insulin changed. You could print off this thread, and take it to him to back up your concerns. This thread might also be of interest to you;
viewtopic.php?f=15&t=9913&p=95132&hilit=lantus+joint+pains#p95132, and these ones too ; http://www.aboutlawsuits.com/lantus-ins ... ncer-4614/ and http://www.altiusdirectory.com/Health/d ... Url=Lantus
Please feel free to PM me for futher info, and as said previously on this thread,it's definately worth contacting IDDT http://www.iddt.org/
Jus

 

[Janna]

Re: LANTUS PROBLEMS

Lauren i recognize a lot in your story too, just like in the others. It's all so awful we had to put up with feeling like this for so long without getting any acknowledgement of what we're going through but at least we have found eachother and maybe all together we are stronger and can get more diabetics to find out about this as i'm sure there must be so many more of us out there on lantus with similar symptoms who are not aware of this, have not made the connection yet.

Been to my gp a few days ago and she called my diabetic doctor, he told her he's reluctant to put me on animal insulin as it's not used much anymore. I'm seeing him at the end of the month to talk about it so fingers crossed i can convince him to let me give it a try at least. Nervous and wary about the meeting, scared i'll lose it and start crying and get angry, i realize it's important to try and stay calm..

I was wondering if anyone has many food intolerances? Apart from my belly swelling up really bad i also feel really knocked out and confused after meals. I'm not sure if this is caused by food intolerances or by the insulin i inject before meals. Since i'm on a low carb diet i feel a bit less ill after meals and first assumed it was due to the low carb thing but maybe it's because i'm on less insulin these days..

Big hug to all of you. Jan.x

 

[janabelle]

Re: LANTUS PROBLEMS

Hi all,
I've been looking at the content of the links I posted earlier, in more detail, and now I'm really worried.
Since 2005 I have suffered occasional bouts of what I call palpitations or missed, ectopic heart beats. I have been for ECGs and other tests, and always been told everything's ok. Over the past 6 months they've become more frequent and intrusive and I was referred to another cardiac specialist last December. I've had a treadmill test, an echocardiogram and a 7 day ECG monitor on. I'm not due to see the doc again till end of April, but they are getting worse and sometimes I feel it so strong in my neck and throat it's hard to ignore, and it's so intrusive. When I saw the doc in December, I said I wouldn't be surprised if the Lantus had caused this, as I never suffered from it prior to taking Lantus. Now I'm scared, after reading other people reporting similar symptoms after taking it.
I'll see what the doc says, and report back, I just hope they ease up meanwhile.
nite
Jus

 

[CarbsRok]

Re: LANTUS PROBLEMS

y

 

[Janna]

Re: LANTUS PROBLEMS

That's a relief to hear more people are using it! I assumed less and less people would be using it. I'll tell him that and i'll print out useful information from the web to back me up..

Thanx! Jan.x

 

[DiabeticVeteran]

Re: LANTUS PROBLEMS

Been to my gp a few days ago and she called my diabetic doctor, he told her he's reluctant to put me on animal insulin as it's not used much anymore.

Translated this means he has no idea about animal insulin.
So many people are using it now that the factory where it is bottled up has had to be expanded.
Do remember it is your right to use what insulin you want.

Hi All,


Doctors, nurses DO NOT want to transfer people that are suffering from Human Insulin onto Animal Insulin because of their "perks" from the Pharmacutical companies! ........ That is a strong belief of mine anyway!
All they do is say, oh, your HBA1C tests are fine, let see if we can make some adjustments. Also, i think they resent putting people back on Animal insulin because they also think it is going back in the "Stone Age" again & all the new drugs are "Wonderful!"

They also go on Statistics, which pi**es me off no end.

Lantus is a Drug & I personally think from my experiences & what I read from other peoples experiences here, its a nasty one!....... it never really had much testing, research, etc & after a period of years, has screwed up many people's life's, including mine in a very big way!

I am being serious with this proposition......
There are probably many other people that are experiencing these problems when on Lantus & are being poorly advised by their consultants/Nurses.

Is there any way, each & everyone of us could put forward a way of getting some kind of compensation from Aventis.... the tw*ts that make Lantus, due to our issues problems we have faced for so long?
Could we all form as one & see a Medical law Solicitor & try & fight this together?

If you think this is a silly idea, please tell me otherwise.

I am just so fed up & upset by the whole **** thing! :evil: :evil: :evil:

Cheers,

Steve

 

[DiabeticVeteran]

Re: LANTUS PROBLEMS

Hi Jus,

I am just so upset to hear what you are still going through, even after coming off Lantus, sweetheart.

I thought I suffered really bad from the hidden effects. Thankfully for me, I have seen big improvements in my health since the transfer BUT as I have stated, I am just so sad, mad & upset that you are still experiencing the after effects.

I am really hoping for you on this, that you can get this resolved very soon.

If you need a chat, please PM me.

Kind Regards,

Steve x

 

[janabelle]

Re: LANTUS PROBLEMS

Thanks for that Steve,
i definately don't think what you suggested is a silly idea- I'm nearly 2 years off the cr*p and I still feel angry, if not angrier-often think there has to be some comeback for Sanofi Aventis :evil:
It's a great idea Steve, and I'm thinking of setting up a website where we can join up together and do exactly as you suggested. Need some advice on it though. One thing is for sure, there has to be more awareness, patients need to know about it, can you imagine how many people who are suffering as we did, and not making the link to Lantus??? I end up in tears many times reading other people's experiences, especially the ones recently posted. and Im so frustrated, and like you want desperately to do something about it.
Lantus is Germany's most profitable export, and Steve,I'm sure your theory about why docs won't take patients off it is pretty close to the mark. I wonder how many hospitals are recieving financiial incentives from Sanofi Aventis, including money to fund nursing posts in our diabetic clinics- and I'd like to see if that info can be accessed through the Freedom of Information Act-that would make interesting reading :cry:
If you've looked at those links I posted earlier, there's someone called Jessica who's also interested in a class-action against Sanofi- and I'm sure there'll be more. If that drug made us so chronically ill, god know what else it's done to us,, or is still doing- as I said, I'm worried about my heart palpitations, especially as the symptoms are getting increasingly worse.
Has anyone got any good suggestions on how best to set up a website about this?
Jus

 

[DiabeticVeteran]

Re: LANTUS PROBLEMS

Hi Jus,

I can help you with setting up the website if you wish.

PM me for more details.

Take care,

Steve x