I give up ...

[xxxleonadxxx]

As the title suggests I am in despair with the world of diabetics :?

I am currently on Lantus and take 9 injections per day (yes 9 not a typo) as I require an awful lot of the stuff but its just not bringing my BS down. I still average 20 -30 bloods every day.

My DSN and endo are great but feel as though they just seem to be yes men these days. They don't seem to listen to me when I explain how much I now despair having to take sooo many injections and don't get how much it has impacted on my life ...... its a bit restricting having to do it all the time.

I think its fair to say after all my ups and downs on my little diabetic rollercoaster, I have now officially reached my lowest.

I'm even at the point now where I can't be bothered to take my meds ...... the thought of a jag free day *sighs* bliss

Rant over

 

[angieG]

Sorry I can't help you as I know nothing about injections etc as I'm type 2 but I hope you get sorted soon and start to feel better.
I'm sure someone on here will help with some knowledge soon. Stick with it I'm sure it can be beaten.
All the best
Angie

 

[ams162]

hello

im sorry to hear u feel so low altho i cant blame u. my 8 yr old son has at least 5 injections a day sometimes more if we need to correct but we are today getting an insulin pump and i do have to wonder if one would suit u being on so much a day and feeling low having to inject so often maybe worth an ask if u havent enquired already its not an easy path we have had to fight and go through alot to get there but u never know if u dont ask.

hope u get things sorted soon feels like a never ending cycle sometimes doesnt it, we are all here tho and ask for help whenever u need too

anna marie

 

[cugila]

As the title suggests I am in despair with the world of diabetics :?

I am currently on Lantus and take 9 injections per day (yes 9 not a typo) as I require an awful lot of the stuff but its just not bringing my BS down. I still average 20 -30 bloods every day.

Having seen some of your previous posts I wonder what sort of diet you are on ? As you are injecting so often is this to cover the foods that you are eating or is it that the Insulin is having little effect.

There have been problems with Lantus as some of the members have already posted elsewhere.

 

[sugar2]

Hi,

Not surprised you are feeling down, you have my complete sympathy.

can I aska question, sorry if I am being dim (again!). Are you on any other insulin other than lantus? When I have done multi multiple injections a day...the one that I have had to do lots of time was the fat acting ones...in my case novorapis. Are you on a short acting insulin as well?

If not, then I think maybe you should discuss the insulin you are on, and how it is delivered with your Drs! get them to say to a pump maybe?

If I have misundertsood, and you are doing multiple injections ofthe short actine...then still, you need a diabetes MOT. Like Cugila said, what are you weating, and are you carb counting etc?


Please don't give up...you can turn this around, and there are people here who can help. I know that this is easy to type...and harder to do, but if you give up, and believe me, I know this because I did exactly that, you really will live to regret it! I know I do. I did turn things around eventually, and things look bright now, but I can completely undo the damage I have already done.

take care.

 

[jopar]

Sorry to sound a bit doubtfull, but I can't see that you are injecting Lantus 9 times a day!!!

Lantus is designed to be injected once a day, some do find that it either tails off after about 18 hours or because of the differnt needs for background insulin from morning to evening, they inject twice a day to make better adjustments for covering a 24 hour period...

The profile of background insulin doesn't lend itself to be repeatly injected through out the day, and repeated injecting would cause some very complex overlapping, which would stack insulin up and make control very unperdictable indeed!!!!

If you are actually injecting in this maneer and not using quick acting insulin, then I suggest that you find youself a different diabetic team... If you are being treated via your GP surgery then I would asked to be refered to the hospital Consultant...

If we've all got the wrong end of the stick, and you are using a mixture of background and quick, then you need to look both at your diet and your insulin dose for the carbs you are eating, as this would be far out indeed or perhaps you may have to ask your team for 500U quick acting insulin, it's not easy to get hold of as it has to come from America under an individual patient licence...

 

[xxxleonadxxx]

Hi there,

Sorry for the vagueness in my original post .... i was just having a bit of a rant.

I have posted my 'situation' on the boards before

For clarity: I am on (currently) 720 units of Lantus per day, hence the 9 injections of 80. I cannot take that full dose at one go and have spread it through the day as double injections etc was soo sore and this was was a bit more bearable ..... until last week i was increasing my dose in 10% incriments weekly. But as I am struggling to handle the doses I am on now we have agreed to cap at this level for the moment.

I am allergic to insulin a :wink: d cannot take any fst acting available. U500 is also no use :x I struggle to take lantus but take further meds to combat the reactions and this is the only insulin I can tolerate, hence it being the only one I take.

My diet is fine and I work with nutritionists and dieticinas and have a weekly menu prepared and delivered to my door to take any of the issues out. I also excercise well and apart from my body's reactions to insulins etc I am perfectly healthy.

I had queried about a pump as I felt this could benefit me but for some reason they dont seem to think it would benefit me.

I am about to undertake insulin desensitisation therapy in the hope that I can get insulin into me and start to become semi-normal again, however I have nothing to compare this to and don't know what to expect as we are not aware of anyone else who has underwent this therapy, escpecially not in my PCT ..... so will have to wait and see.

My health team are great, and I would not change them for the world. They are understanding and very forward thinking ...... I think without them I would have received a nice shiny bullet out the back door by now lol ..... I just get a bit down at times and moan

Hope that this helps clarify my earlier post

 

[cugila]

Leona.
I read in one of your posts that you were due to get this 'Insulin Desensitisation Therapy' back in March 2009 ?

You are now being pumped full of Insulin (Lantus) at mega dose throughout the day and as Jopar says this seems very odd. Lantus is not designed to be used that way. It is a background Insulin as far as I am aware.

Is this part of the therapy you are talking about ?

Hope we get some more input here as I am struggling to get my head round why this should be your regime. :?

 

[iHs]

In fairness to xxxleonadxxx although Lantus is a background type of insulin it can be used throughout the day to control bg levels as its effect accumulates. It is just a slow acting insulin.

A lady at my hospital is type 2 but injects Lantus 4 times a day and no bolus..... so it takes 'all sorts'.


Sounds to me xxxleonadxxx as though you have developed antibodies to certain insulins so I wish you all the best with getting the problem sorted. Do look up 'plasma exchange' which may well help you.

 

[cugila]

iHs.

Would the dose in that scenario be as high as Leona is taking ? It seems an awful lot.

 

[iHs]

Believe it or not, there are some people who take over 1000u per day of insulin because of resistance which can come about through obesity and through other medical problems.

We 'live and learn' :wink:

 

[cugila]

We certainly do. Is that correct for Lantus or in total when combined with a quick acting Insulin.
I was also under the impression that the Lantus (basal) doses were supposed to be around 12 hrs apart minimum. How does the 4 times a day work then.

Thanks for the heads up.....I am willing to learn from anybody. :wink:

 

[HLW]

Would the dose in that scenario be as high as Leona is taking ? It seems an awful lot.

When I was talking to the nurse at my appointment for starting insulin, I was reading the instructions for the insulin pens where it says something along the lines of 'for doses over 60 units, you will need multiple injections as the pen can only do 60 at once'. I mentioned this to the nurse, she said she sees patients with type 2 diabetes that use hundreds of units a day, doses that would be fatal to me and her, because they are so insulin resistant. So it is possible to be taking that many units.

 

[cugila]

Yes, I agree with what you say, however the stumbling block here is that Leona says she eats a 'healthy' diet, has meals bought in to her and I am not sure if she is overweight or not.

Lifestyle measures are a way to manage Insulin Resistance, with diet changes to help reduce weight, reduce the intake of simple carbs and have an adequate protein intake. Increased exercise also helps. Obviously there may also have to be drugs too.

I was wondering what the carb content of these prepared meals is that Leona gets ? That would have to be covered by Insulin, more Insulin. Could that in itself be the reason why she needs a much higher dose ? Dieticians are not exactly renowned for getting it right every time. I spent 10 yrs nearly killing myself because of wrong dietary advice !

Not arguing.....just interested to know more. Makes a change for me to be asking the questions

 

[janabelle]

Hi Leona
You say you are allergic to insulin, but what insulins have you tried? Have you tried animal insulin for instance?
Many people have problems on synthetic human and analogue varieties, this is well documented. Lantus is not "insulin" but a cleverly constructed synthetically produced copy, which for many people does not work. I speak from personal experience, although I was on a much lower dose than you.
I've never heard of anyone being on anything like as much Lantus as you are on. I'd also go so far as to suggest it may be dangerous to be taking such a large dose of Lantus, expecially if the recent link to cancer is to be taken into account.
I'd strongly recommend you contact the IDDT (insulin dependent diabetes trust), they may have heard of simlilar cases like yours, and they have a lot of in-depth knowledge about different types of insulin. Here's a link to the website, give them a ring. http://www.iddt.org/here-to-help/contact-us/
Are you severely overweight, do you have any other medical conditions? Also what is your diet and activity like during the day?
Please don't give up, we're all here to support you.
Jus

 

[xxxleonadxxx]

Hi there,

thanks for your replies.

Yes Cugila, the desensitisation therapy has been threatened for a while now, however it is fraught with red tape and has taken so long to get off the ground. My PCT had to prove that all other options had been exhausted .... which they have been. My lantus dose is not part of that therapy, I have not yet started. This will be done inconjunction with another hospital and my anaphylaxis specialist.

In answers to some other questions:
No I am not severely overweight, like everyone else I could lose a few pounds though lol. I had gained LOTS of weight previously but have now lost, through good diet and exercise, and now maintain a curent healthy size. i do not hang myself up on what I way but more on my measurements. I am 5 ft 7 and size 14-16. My endo is more than happy with that as am I x

Insulins, I have tried them all. even u500. None of them are any use. I have a severe allergic reaction to all. I have an underactive thyroid but thats about the limit of my ailments now (except for the diabetes lol)

As I say my diet is balanced, lots of fresh veg and I don't no carb, I low carb lol I take in roughly 1000 - 1500 calories a day (done effortlesly by sticking to my meal plans)

I can't answer why I am on the dose I am ..... but re-iterate that I do trust my health team .... I s'pose in fairness if I didn't take the lantus there's probably nothing else they can offer me.

I am very grateful for the advice on the boards, its always good to have a fresh pair of eyes, and ears lol ...... i've learnt so much by reading these boards

 

[totsy]

i actually met someone at my retinal screening app who was also on extremely high lantus for insulin resistance too,
as for lantus alone i was on that a few yrs ago when i first joined here and everyone was telling me i wasnt a type 1 if on lantus and metformin alone, i too have bad allergies to many items and have taken anti histamines daily for over 5 yrs, i luckily didnt have too bad a reaction to novorapid so am on that now and have been for over 2 yrs, i sympathise with you as having severe allergies is horrible,
really hope they get you sorted xxx

 

[MushyPeaBrain]

Leona your post really interested me and I went researching into your situation because it sounds horrendous. In the USA some diabetics have found they can take rapid acting insulin if it's mixed with dexamethasone, an injectable steroid that deals with the allergy symptoms. They would also put you immediately on a pump as this reduces the amount of insulin needed so decreases the reaction etc. You should be a priority case for a pump even if you have to pump the lantus as it would keep you more stable and reduce the damage to your body from constant injections of high doses.

This link on desensitisation to treat allergy may interest you :
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1352375/

This link refers to a UK specialist who deals with diabetics like yourself:
http://news.bbc.co.uk/1/hi/health/7804443.stm

I hope these are of some help to you in finding a much better solution

 

[MegaMan]

For clarity: I am on (currently) 720 units of Lantus per day

Thats a massive amount I only take 16 units at night and that lasts me 24h then 10 stabs of novorapid with food through the day

 

[MushyPeaBrain]

Bouncing for Leona to see