LANTUS USERS - PROBLEMS

Re: LANTUS PROBLEMS

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Re: LANTUS PROBLEMS

janabelle said:

Steve
I just want to let you and everyone on the forum know what an amazingly strong, determined, postive and courageous person I think you are- You've made my year and my decade!!!
Jus x

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Dear Jus,

Thankyou ever so much for your kind comments.... means such alot

My feelings are ditto as well, as you have had to go through one hell of a lot as well over the past 5 years...... You are a very strong person too.

I am so glad I have got in touch with this forum & have met great people like yourself!

Take care & speak soon.

Steve xx

Re: LANTUS PROBLEMS

CarbsRok said:

Steve, I suspect it would be a non starter.
I vaguely remember being told years ago that it is impossible to make a claim against the insulin :!: manufactures because you need to have expert medical advice/witness to testify. As I understood it the manufacturers pay each consultant a consultancy fee. Thus a conflict of interest. Which means no matter what the consultant believes/knows s/he can not be a witness.
As I said it's only a vague memory from the past so you need to check with the IDDT about this.

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Hi CarbsRok,

Many thanks for your reply.

I will be speaking to the IDDT over the next week regarding this, as you have rightly said that the consultants have their Blinkers on & wouldn't surprise me if they are covering up facts......just to get their additional fees!

I will also look into if people's experiences can be used, during & after the Lantus change.

I feel this is very important as , although the majority of people have got through the devastating effects from this.......it will be a matter of time, due to negligence from the pro's, before people's life's will be taken!

I hope I have not come across too sharp here.

Regards,

steve

Re: LANTUS PROBLEMS

Jus i'm so sorry to hear about your heart problems.. I hope they find an explanation for it and they can fix it for you and that it's not due to the Lantus. (worrying thought, the long-term complications it might cause..)

Steve and Jus i'm up for helping with the website and if it's a possibillity with a court case too. I've been thinking about it too but like was said onhere we will need physicians, evidence,witnesses etc. on our side, which will not be easy. I'm definitely willing to try and make this happen though. I'm not the most technical person when it comes to the website but could help with posting messages about it on other forums and make people aware of it's existence.

Jan.x

Re: LANTUS PROBLEMS

Jus,

It was always in the back of my mind that it was something to do with Lantus, then when I found this site I just knew it was it causing my problems!! Its unreal that diabetic speacialists, doctors and consultants arnt taking notice of us and our problems, after all if it wasnt for Lantus we woudnt have them. Its bad enough being diabetic!

Ive just reported all the problems Ive had from Ive been taking Lantus, hopefully with us all working together to make these unwanted and unneeded problems known, Lantus will be closely monitored or maybe even removed! I feel that if we all stick together we could maybe get somewere.

I was thinking of printing some of these posts out and taking them with me to see my diabetic specialist, just got an appointment through for the 22nd March. This time I will put across to them everything, usually I dont bother because they just look at me like am mad, or say no Lantus doesnt cause that, now that I know I am not the only person suffering I feel that I can do this.

Your reply make me feel a bit better, so am ever so thankful for that. Ill keep in touch, big hugs for you and your husband. Speak soon.

Lauren xx

Re: LANTUS PROBLEMS

Hi all and Janabelle,
Went to GP told him about problems with the Latus after standing on his scales I found I'd put a stone on, showed him how blown I felt and that my stomach was in my chest and felt real sick with it. He stopped the Lantus and put me on Byetta two shots a day just to see if it will help with the BG levels give anything a try lets hope it works.

Re: LANTUS PROBLEMS

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Re: LANTUS PROBLEMS

CarbsRok said:

Here's a way to get the lantus/ analogues investigated
http://www.ukdrn.org/JLAsurvey.html just fill in the survey and ask for research to be done :mrgreen:

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Hi CarbsRok,

Nice one, thanks for posting link. :wink:

Steve :mrgreen:

Re: LANTUS PROBLEMS

Hey guys,

Wee update.. Went to see diabetic nurse the other day and came all prepared to discuss the option of changing to animal insulin. But she almost straight away was shaking her head etc. then when i pulled out the folder the lovely people at IDDT had sent me i noticed her disapproving look straight away and she was saying how she was aware of the IDDT and in quite a condescending way how they are scared for human insulin for some reason.

She said switching to animal would be like going from one sinking ship to another and that the 5 people she knows on animal insuline are not well regulated. I realised there is just no way they'll put me on animal insuline, they're so against it. I ended up agreeing when she aked me to give her chance to try sort me out with my current insulin. I know she meant well and is genuine about wanting to help me but still..

Is there any way i can buy animal insulin on the internet? I know that's not the safest option but just to try it out for a few weeks. I really am desperate, this has been going on for way too long now..

Jan.x

Re: LANTUS PROBLEMS

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Re: LANTUS PROBLEMS

CarbsRok said:

Hi Jan,
Your DSN sounds very anti helping you to help yourself.
Basicaly she is bullying you, and you are allowing her to do it.
IDDT are not anti synthetic insulins they are for freedom of choice.
YOU have the right to choose which insulin you wish to inject into your body.
There is a patient charter which stipulates this.
Please make her aware of it. I would also question her motive in refusing you the chance to feel healthy and well.

She said switching to animal would be like going from one sinking ship to another and that the 5 people she knows on animal insuline are not well regulated.

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Perhaps they are under her appaling care :roll: As then again I know lot's of people with very good control using animal insulin.

Is there any way i can buy animal insulin on the internet? I know that's not the safest option but just to try it out for a few weeks. I really am desperate, this has been going on for way too long now..

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No Sorry as it's prescription only.

Just go back and insist that you be given it. Go to the consultant and say point blank you have lost confidence in the team and you want (A) insulin of your choice and (B) It is your life and well being at stake not his/hers or Joe bloggs it's yours.
There is a 14 year old boy on another forum who has just changed over to porcine insulin after being on Lantoss and Novo. He has halved his insulin requirements and feels well for the 1st time since diagnoses 2 years ago. Oh and he took a week with his mum to sort out his dose. He has nr perfect numbers as well.

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Hi Janna,

I fully Back up what CarbsRok has posted. The IDDT are a lovely bunch of people & are a great team which specify that the Patient (you) has the freedom to chose what medication you want to go on!

Again, going from my experiences, I can not emphasive enough, that the Human insulin I was on, just did not agree with me, causing the devastating problems in my life.

Just by doing ONE thing,changing insulins, I am a different person, fullstop!
My control is getting better by the day, considering being stressed under my situations at present.

Sorry to say this, but how on earth can your DSN be so ignorant to this? Human analogues are relatively new and this in itself can give certain people bad side effects, as it is a GM substrate.

AS one Doctor stated, there will have to be Animal Insulins readily available for people due to the above situation.

My advice is, go back to see her again & say you want to change to animal insulin. You have a right to do this.
It is you that has to live & cope with it..... NOT your DSN, tell him/her that!

Very Annoying! :evil: :evil: :evil: :evil: :evil:

Please let me know how you get on.

Regards,

Steve

Re: LANTUS PROBLEMS

Hi Carbsrok and Steve,

Thanks for your motivating replies. Being on these forums and being able to talk to other diabetics with similar problems is so comforting. And it's really promising to hear about the people who seem to do so much better since changing insulin. I've been feeling a bit down the dumps since i saw the diabetic nurse but i got up again and you're both right and i should have the choice of using the insulin i prefer!

I had a look at the company's website who supply animal insulin in the UK and it says if you live abroad (i don't though, i live in the UK) you can send them a letter from your doctor and they will send it to you. So i contacted the gp i used to see when i still lived in Holland and she agreed on sending that company a letter (she knows my history of problems with all this). I hope they'll send it even though i live in the UK..

I would have to pay for it but i just really want to try it out for 1 or 2 months. That way if it makes a change in all my symptoms i can at least tell the diabetic doctor overhere i have tried it and it made me feel better and i'm not wasting his time incase it doesn't make a difference. (although he'll probably be annoyed i went behind his back)

I'll keep you posted! Jan.x

Re: LANTUS PROBLEMS

Janna - can you take someone along to your appointsments with you fully primed to assist? It is very difficult to argue these things because it is about you so it is personal and the person you are dealing with claims you cannot maintain distance. That is when your advocate should step in and tell the DSN to knock it off.

I've never had to do this because it was my hospital who strongly recommended I switch back from human to animal in 1989 but I would suggest booking another appointment and preparing a speech and back up information such as your experiences under lantus, your readings, why it isn't working for you and ask to be changed. It is your life 24-7 and you know when it doesn't work. Or could you go to a consultant or a GP and get them to do it?

I've been on animal for 23 years (4 years on human 3 comas later switched back). My last 4 hba1cs were 6.0. I am not on a pump and am effectively a very cheap user for the NHS.

If it doesn't work within 2 months you could agree to switch back as a compromise position.

Good luck.

Re: LANTUS PROBLEMS

Hi Tigger,

Thanks very much for the advice. I will definitely take my bf to the next appointment. I'm very annoyed with myself though. My previous appointment with my diabetic doctor was at 8.30 am and i must've switched off my alarm without realizing. This happens almost daily and i miss my morning classes at uni all the time. I must be so far gone in my sleep and always wake up feeling very ill so even when i do wake up i am too ill to do anything and need a few hours to feel human again. I called the hospital as soon as i woke up in tears as i had eagerly been waiting for this appointment to discuss switching to animal insulin. But the secretary just sounded very annoyed and said i can't see the doctor till the end of august now (i can understand she doesn't know my situation)

However, i was in Holland last week and my gp there was really sweet and understanding about it. Animal insulin is not available in Holland but she gave me Insulatard as i told her i'd rather stop injecting all together than keep injecting that awful Lantus into my body. I know it's still human insulin but i've been using it for a couple of days now and already wake up feeling better than i did on Lantus, that poisonous feeling seems to be gone!! It also felt this morning like i actually had insulin in my body, while on Lantus i always had that 'keto' feeling. My bloodsugar level was 7.2, that has hardly happened for years, it's usually either very low or sky high in the morning. My head feels a bit clearer too, less foggy. It's still human insulin though so not sure wat to think about it.. I feel sort of happy but at the same time scared that the ill feeling will come back and that it's maybe just psychological..

Has anyone else improved by going from Lantus back to a non-analoge insulin? I still have my mind set on getting switched to animal insulin though as i have so many other symptoms but it's so good to feel more like a human being again

Jan.x