• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

HELP!!! What do i do?!!!!

Inhealed insulin, past clinical trials and licenced then the licence was revolked over concerns of lung cancer! so futher reseach etc needs to be done to clarify before a new licence can be granted..

As for non-needle injectors..

May well have been around since the 40's but to gain a licence for medcial use they to be proven that

a, that they can deliver a accurate measured dose
b, that they are actually safe to use and not causing long term damage..

Most of the injectors have failed on or both of these fundementaly criteria's

Some due to not being given a realiable measure dose through the skin, and some because after long term use skin was becoming damaged etc..

There are many drugs and medical equipment that looks promising and even gets through Phrase 3 clinical trials (last before being put forward for licence) but once licenced and in use at a larger scale or over time, it becomes apparently that yes there is problems and concerns so for safety the licence is revolked..
 
sicko666 said:
Instead i am forced to use an almost prehistoric device
Click to expand...
Are you talking about a syringe? Have you tried an insulin pen with 4mm needles? There is no way needles that small can 'scratch the bone', and they are not prehistoric - the needles are very fine, it has only recently been possible to make them that tiny.
 
yes thats the seam for a lot of people.my self being one of them that has injected for 35+ yrs.hate every day of it but still do it because thats what has to be done not though choice ,and yes i did read all the thead, :lol:
 
Might be worth contacting Wockhardt http://www.wockhardt.co.uk. When the big companies started withdrawing animal insulins, they recognised that insulin choice isn't about money, and undertook to keep pork/beef insulin available indefinitely for those who need it. If it's a demand/production cost issue affecting your device (rather than safety) they may be able to step in.

In case this is unsuccessful, please be aware if you use a pump, you'll need to test multiple times each day, especially at the start while your dose regime is established. The Veo can connect to wireless continuous glucose monitoring (CGMS), which would reduce the testing, but normally CGMS is self-funded. If your specialist supports it you might get it funded, but would be a struggle. You might not be able to use each 'set' for 3 days either, if you get troubles with the eqiupment or the site. It might be better for you than multiple injections, but it's not a magic wand.

Hope this helps
 
Thank you for your help you seem to be the only people that care!
LittleSue i did not know about that company being the one stepping in, i am on pork insulin and it might have been them that my chemist gets it from....Thats one company that has my undying support, literally!

Update on what is my farce of health care.....
Spoke to my consultant, told him what has been happening, his advise, "see your GP about Hypnotherapy to over come your needle phobia". When i informed him i had already been through it once in the past and it didnt work his response was " needles dont hurt that much ". When i then asked what alternatives have i available? He replied " I dont know speak to the diabetic nurse about those things there are many treatments available these days", so i asked "what about a pump, he replied "no you can not have one of those, see me again in 4 months time"..... :shock:
So i waited and waited to speak to the diabetic nurse. I had all the information i had to find out myself with me ready to offer alternatives to see which i might be able to use or not....

Injex30?
"Dont know",
heres all the info,the website,email,telephone numbers, and he said it is available in the uk.
"mmm i will have to check"
Is U-500 available so i only have to use it twice instead of four times a day, cause jet injectors hurt!
"Yes i know they do, yes U-500 is available but i will have to get confirmation it works with the Injex30"."Phone me tomorrow" .
What about pumps?
"Yes they would probably be ideal, especially one with CGM"
Can i get one i thought the CGM part was not covered on prescription?
"Yes that right, and to be honest your have to wait a very long time for a pump as well"
What do you mean?
"Well they havent even set the system up yet and theres a huge backlog, and their expensive we havent got the money"
Well what am i supposed to do then?
"Well phone the consultant and see what he says"
" i will contact Injex again to see if they can use U-500, phone me tomorrow"
"Try diabetes Uk perhaps they might be able to suggest something"

Why the hell do i have to see these people? I am the one that has to contact manufactures ,find out if there available on prescription and offer alternatives! I SHOULD BE THE ONE BEING PAID THEIR SALARIES, then i could pay for the devices myself and get them directly from the makers themselves!!!

I am STILL trying to find a solution, perhaps if someone knows how to make a bomb would kindly tell me i will slam it on the table the next time i see these "professionals" and i might be offered a realistic alternative to several thousand needles a year which they know is NOT a reality!
I really am starting to understand why there are so many revolutions going on in the world!
 
Have you actually tried an insulin pen rather than a syringe?

There are some new novo nordisk needles, called novotwist, they look even shorter than the normal ones because of the design of the plastic bit, and are tapered so seem to go in easier.
 
Yes the diabetic nurse threatened me with one when i saw her, she even used a "Hide the needle" adapter too, i am afraid it was no good (hell i nearly punched her, if it wasnt for the fact she was obviously going hypo herself i might have actually hit her! ).Hell point a gun at me and no worries, but point a needle at me and i will rip your face off!!!!!!
I know its madness, but someone who dosent suffer from a needle phobia can never really understand, i mean even myself can understand how absurd it is. Its like when other people tell me thier own phobias i would never, ever, really understand it fully, its one of those weird personal quirks that only you yourself can feel and it cant be explained, lol believe me the number of people i have tried to explain it to over the decades! I suppose the best explanation is: Why are some people tall others short, some naturally fat others thin, some diabetics others not, some scared of spiders others have them as pets,some have phobias imprinted on their phyicy as a child others just mimic their parents phobias but dont have them imprinted permanently?

I cant remember if i mentioned this or not but during my searches i have discovered a lot of really nasty things.....

Jet injecter makers being pressured by bigger well known companies to sell their patented devices to them and then those same big companies killing working devices off just to sell their own treatments ( so no money outlay to change manufacturing equipment ).

U - 500 insulin the 5 times more concentrated insulin than the U - 100 insulins being stopped because only 200 insulin resistant patients were using it. Again, not giving a **** about lives just money!

Other forms of treatments not even being told to patients but only the "big boys" devices being offered not because their cheaper or more efficient but because threats to withdraw lower prices being available and training to use these items costing more.

I, i just dont know what is happening to the NHS, i really do fear there is a lot of stuff going on behind closed doors we never hear anything about and this really does worry me for all of us in the UK.....I am not just getting this information from bitter rival companys either i have quite a few relatives that actually work in the NHS itself, one in the phiciatric area,one in the general health are and one thats actually in a managerial position of a hospital......
 
You say the nurse threatened you with one, but did you actually use it to inject yourself?

I can't cope with blood tests, almost wet myself in fear during the last one. My clothes were damp with sweat afterwards. Which of course makes it worse, as the adrenaline makes the veins collapse, but what can you do.

It's specific to needles in veins I have worked out since starting insulin injections, I can't even watch on TV when people have drips in. Other injections eg vaccinations aren't exactly fun, and do worry me, but I don't get the same panic as I do with blood tests.

My first insulin injection, I was holding the pen for ages first, considering making the first injection an overdose so I never had to do it again. In the end I plucked up the courage to inject the correct dose, and I couldn't even feel the needle go in, I had to look to see if it had or not.

But as you say, phobias are not logical and affect different people differently, so YMMV as they say.

The 'hide the needle' thing sounds like a terrifying idea, I need to be able to see the needle and control when it goes in, I couldn't cope with someone else doing it or not being able to see the needle.
 
No i didnt, but i did examine it closely just to see if they in fact are a lot smaller than the disposable syringes i was forced to use before the heavenly jet injector, and to tell you the truth they do not look that much smaller, sure they are shorter, but not that much decreased in the width!

I can well understand you fear of vein injections ( i have to look away when needles are on tv as well lol! ), but i get and feel like that with any needles myself, be they veins ,fatty tissue,or just plain finger pricking ones. I have been like that since childhood,when it comes to needles in a public place, ie finger pricking or vein blood drawing at hospitals i hide my fears and try not to give any outward signs (men are not supposed to show fear are they lol? ), but the fellings and fear are there....Having had no choice because logic is telling me i have to suffer dosent mean i am not thinking of killing the person while they are doing it, just i havent done it yet!
But that is the thing, from going from 2 needled injections a day, to 2 needless injections, and now being forced into 5 injections and 5 more needles in finger pricking form to use the bloody pen injecters because they only use quick insulin.I....I just cant do it....my sister nearly died when she lapsed into a coma after her not doing her injections for 3 days i really do feel like i am being forced into doing the same thing, when my old Sq-Pen finally does break i am struggerling to find any other option! I know this sounds bad but i have even have been given an increase in my "happy pill" dosage and its not changing how i am feeling at the moment.....Perhaps using the I?njex30 four times a day will be ok, just jet injectors DO hurt and using it four times a day will definetly not give any time for the injection sites to heal before being used again....
Lol what do you reckon, will a suicide bomber attacking the NHS make them realise needle phobia actually exists?!!!! Lol.....
 
If you can bear it, I would really recommend trying out an insulin pen with a few different needle types to see if any are OK.
I have found differences between the 3 types of needle I have used eg the 6mm novo nordisk ones looked a lot more worrying than the 4mm BD ones because of the longer length, but the 6mm ones seemed pointier and better lubricated or something, they seemed to go in easier. I've now got some new 5mm novotwist ones, they are a lot better - they look smaller and seem to pierce the skin/slide in as easily as the 6mm ones.
But ofc they are all still needles sadly.

Re: lancets for blood testing, I use the accu-chek multiclix one, I find that a lot easier to use than the others, as you don't have to handle the exposed needle / pointy bit.

They realise needle phobia exists, but as you say the jet injectors hurt more and cause more skin damage so are not a great option. Hopefully some of stuff in development eg tablets will turn out to be successful, although that doesn't help here and now I realise.
 
Lol i have heard that all my life about "other" forms of treatment maybe available soon so i will take that hopeful statement with a big pinch of salt (no offence though just i have heard it so many times!!!!) .
I did receive this information though about the Sq-Pen for others who might not discovered:
-------------------------------------------------------------------------------------------------------------------
Dear Ian,
I have read your query regarding the SQ-Pen and done a bit of research for you, it turns out that the original manufacturer had been sold to a company called DMI in the Netherlands (Phone number: 00331203160146)
As a result, the product was taken out of the Drug Tariff.
(The Drug Tariff is a guide which lets Doctors know what is a available to prescribe on the NHS as well as Pharmacists, and lets them know prices etc.)
I have spoken to the original UK supplier for you which is a company named UL Medicines who still have some stock of SQ-Pens and all the various parts associated with it.
However, the next set of problems you are going to face now is that it is only available on a Private prescription and I don’t have any idea of the prices, and unfortunately it doesn’t look as if this to going to be a long term supply.
Best thing you can do now is inform your GP & Pharmacist of this information and take it from there.

Kind Regards,
André

André Mills RegPharm Tech
Pharmacy Services Technician

Tel:
01207 279400 Ext:295

Fax:
01207 279372

Email:
andre.mills@Quantumpharma.co.uk
--------------------------------------------------------------------------------------------------------------

Lol i do especially like the:
"Best thing you can do now is inform your GP & Pharmacist of this information and take it from there." part! I have been waiting weeks and still have no answers from them, this is the most information i have discovered out about the Sq-Pen from either the GP,Chemist OR the Diabetic Nurse at the hospital, and this info is from ME contacting a major pharmaceutical company myself and them being nice enough to investigate and share what they have found out , which they didnt even have too! Nice one Quantum "Andre"

Er...cant remember if i have told this info here or not, been emailing Sooooooo many people and places i must be repeating my self a million times over! The "InsuJet" which is an identical looking device,also from the Netherlands as the Sq-Pen is, but injects Pen cartridge insulin apparently, is also NOT available in the UK!

Please if ANY importers of medical supplies in the UK read this, (or someone knows WHO to contact that will reveal this info to us mere mortal suffers ) PLEASE JUST SAY WHAT JET INJECTORS ARE AVAILABLE IN THE UK ON PRESCRIPTION!!!!!!!!!!!! I know the Injex30 IS but this device is too small an injector, i am still waiting to here back from them directly about their 100Unit version but so far.......
Why on Earth is this information so difficult to discover?........
 
Also does anyone know who, what organization i have to contact about what is on the Drug Tarrif?
I mean if the Sq-pen was on the drugs tariff, another company now makes the thing surely it would still be on the tariff right? I mean its still the same Sq-Pen, so who is the person that removed it from the Tarrif, and how do i contact them to add it back on?????
All this bureaucracy and business dealings are not my thing, now if someone needs a 3D mesh created i might be able to help but this is all areas i have no brain power for! :?
 
An update for those interested...
I managed after a lot of hassle to get my GP to write out a prescription by hand for the Insujet after i told them it was officially available from the 1st of September on the drug tariff.They at first refused saying their system wasn't updated yet so they couldn't prescribe one but after contacting them every day harassing them stating they should go on-line to:
http://www.ppa.org.uk
Where its stated its available and gives the PIP code they eventually wrote out a prescription ( why the hell did i have to wait, why couldn't they have done this on the first?!! ).
Anyway,its NOW the chemist that seems to be the one holding things up! The order sheet from Insujet itself had two options,
1: Method of shipment -Express insured- (2-3 days) = £21.
2: Method of shipment -Normal insured- (6-8 days) = £13.
Its now 9 days since i handed over the prescription personally and after phoning today they said "it isnt on our system"....... :evil: I have to wait till tomorrow when the head chemist is there to find out why but i bet it will be a pathetic excuse like always!!!!!!!!!!!!

People say we should not take up the American health system and i would have been the first to agree in the past, but honestly, now that it seems i personally have done all the work,contacting everyone,pressuring people who are supposed to be "helping" me, and yet still i am waiting....If we used the American system i would have been able to have got the bloody thing months ago. Seriously, i am failing to see why these professionals are paid the amounts they are, hell if they gave me the money they pay them for my hourly visit once a year i would have had the money to buy these things ten times over!!!!

Aaaaagghh!!!!! Still waiting.......... :cry: :cry: :evil:
 
IMPORTANT UPDATE!!!!!!!!!!!!

At last, at last i have finally got a new Jet Injector!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It arrived last night 17.10.2011.

The HERO in my quest has got to be, without any question:

InsuJet.com

Maarten Kohlrautz BEc LLB


T +31 20 31 60 146 Euro Offices building- 3rd floor

F +31 20 31 60 141 Beechavenue 127

M +31 6 20 62 7071 1119 RB Schiphol-Rijk

E m.kohlrautz@care4pharma.com The Netherlands

From as soon as contacting him he has bent over backwards trying to help.

1: Told me when the device would be available on the NHS drug Tariff. Which i used to make my Gp write out the prescription for telling them this fact.

2: He even opened up a "paypal" account after my chemist refused to pay to InsuJets bank account, because it was "abroad" and doubted if the NHS would therefore reimburse him for sending money abroad!

3: After the chemist STILL refused to pay, Maarten ( A absolute HERO in my books! ) sent the InsuJet to the chemist anyway without actually being paid for it first! Who here could say the same of many other medical companies giving anything before getting the money for it first, i cant!!!!!!

So now, after 4, i repeat 4 months of virtually no help from any medical professionals that are supposed to be part of my "care team" ,please someone tell me again why are these people paid such huge amounts of money for doing nothing? I have a new jet injector lol it may be lime green, and it only goes up to 40 units, but it works, came with nozzles,vial adaptors,a hard case to keep it in and even a nozzle remover lol which will mean no more having to use kitchen draws to pull the old nozzles off with ( a small but very important addition which i never got with the Sq-pen lol! )......

There is a new order form available from :

http://www.insujet.com/index.php?m=downloads

And

http://www.ppa.org.uk and search for "jet injector" to get the PIP codes.


So if your interested just print these off and take it to your GP for them to write out a prescription. Then take prescription and the order form,it has all the bank account numbers and contact details on it to your chemist.

Lol its been a nightmare finding and then getting a prescription, then getting the chemist to do something.....BUT if i can get one then i reckon anyone should be able to. If any of the above give you problems then point them here so they can see someone already got one so they have no excuse not to let you get one too!!!!!
 
So..is it any good? I really hope so after all the efforts you went to get it!
Hope you are loving the new injector.
 
Lol guess i should have said shouldn't i though i hadnt actually used it when i posted lol!

I really can not tell people how much of a relief it is to finally get one though, its been a real nightmare!!!
ANYONE, i repeat ANYONE, who suffers from needle phobia there are now two alternatives instead of a life of fear, the "Injex30" which has a max of 30units,or now, the new "InsuJet" which although slightly bigger still only goes up to 40units BUT let me say i would not swap it for needles EVER!!!!!!!!!!!!!!!
In use it seems less painful than the Sq-pen, but i am not sure if thats to do with the fact i cant inject as many units at a time, or not.10 Units less infact, ( lol this also makes it 1cm shorter in length if anyone cares about such things! ).The unit itself looks virtually the same as the Sq-pen and operates the same way too, and in fact it can use any of your old Sq-pen nozzles and vial adapters you may already have too.So if you have problems waiting for the chemist to get replacement nozzels or adapters you can use any of your old Sq-pen ones ( not ideal but sure is good to know when you have problems with the chemist! ).

As with all jet injectors, by the very nature of how they work they will always "hurt" but this is a price to pay.Which is also why i am slightly disappointed they decreased decided to decrease the size of dosage that can be used at a time,lol, with things that hurt people tend to want to do it less or is that just me lol? No seriously though, i am over the moon and Maarten at InsuJet IS my hero for what he has delivered to me, fear has now gone and what possible words could i use to thank someone who removes fear from their daily lives?.....

Lol, now my quest will be to find a concentrated insulin to use with it so i can go back to injecting twice a day instead of four times.Agh the joys of being diabetic are endless lol!!!!!

Thanks for asking sugar2 and yes i LOVE it, and its used identically as the Sq-pen so using it is simple too (lol always a bonus were i am concerned!) :lol:

P.s.If anyone needs to know any more details dont hesitate to ask and i will try to answer...

P.P.s. Lol because my mind is usually in a constant state of confusion, if anyone does have any questions please narrow down what it is you would like to know specifically otherwise my mind wanders about all over the place lol!!!!
 
Excellent to hear you finally got there!

Great example of perseverance and effort!

Great post for those who may see themselves in a similar position.
 
Thank you all for your kind words of support, this place IS the best site for diabetics anywhere!!! Lol and i have been to many places lately looking for help believe me lol!!!

If nothing else, i hope people reading this might take inspiration from it. DO NOT take blindly what you are told from "professionals" as being told what the only options are available, as in this constantly changing times they might not even know all things that are available to us.
NEVER give up hope, lol, even this bitter and twisted old man has to admit without it i might have given up! :wink:
 
no good asking for a pump then the needles are bigger then every to put the set in... :lol:
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…