Humulin u500 Insulin anyone in UK ?

[Adamuk1001]

Hi , just before Xmas my diabetic consultant and nurse that they could no longer supply me with the Insulin I been using for bout 5 years very successfully , because they had been told that it was too dangerous to use in a pump as some users had inadvertently overdosed with the 5x stronger insulin in a pump.
I can't really see how they managed it !
Anyway I was told I would have to use pens with the Insulin inside.
I tried it for some weeks but it was not successful, my readings went sky high ( 28-30+).
At my last consultant meeting I told them I could not go on like that anymore and I was going to go back and use what I had left of the previous supplies with my pump ( bout 4 months worth) and they said ok but they won't be able to supply it in future as it was not available.
I have checked with Lilly and company in US and it is still available.
Sorry bout the length of this but...
What can I do bout getting the supplies I need ??

 

[marla 2]

Hi , just before Xmas my diabetic consultant and nurse that they could no longer supply me with the Insulin I been using for bout 5 years very successfully , because they had been told that it was too dangerous to use in a pump as some users had inadvertently overdosed with the 5x stronger insulin in a pump.
I can't really see how they managed it !
Anyway I was told I would have to use pens with the Insulin inside.
I tried it for some weeks but it was not successful, my readings went sky high ( 28-30+).
At my last consultant meeting I told them I could not go on like that anymore and I was going to go back and use what I had left of the previous supplies with my pump ( bout 4 months worth) and they said ok but they won't be able to supply it in future as it was not available.
I have checked with Lilly and company in US and it is still available.
Sorry bout the length of this but...
What can I do bout getting the supplies I need ??

i use that same insulin and in a pump for awhile now with no problems i would contact lily and try to get it directly from them

 

[Adamuk1001]

Hi Marla
Thanks for your input.
Your suggestion I get Insulin direct from Lilly leads me to believe you may live in US . I am in UK and rely on the NHS to cover cost of my meds, which is just as well because the cost of this Insulin as you probably know is very high.
At the my last appointment my Consultant asked ME to find out if it could still be supplied by Lilly.
Anyway it appears it can still be supplied in 20ml vial, although they do say it should be supplied with a special syringe.
I take it you have not been told not to use the insuIns with a Pump.
Well at least I have something truthful to say to my consultant when I see him.
Adamuk1001

 

[marla 2]

your are very welcome and yes i am in us . i asked if it was safe with the pump and my endo doctor said it is safe as long as you monitor your sugars

 

[Adamuk1001]

Well Marla
You can be my insider !
Thanks again
Seems like some pen pusher being somewhat economical with the truth hete , maybe someone with an eye for a career in politics !
Adamuk1001

 

[Seacrow]

I am in the UK and also using Humulin r500. Lilly have decided that producing this in vials is too dangerous, and are stopping production worldwide. Vials will be available until stock runs out. This is from their 'customer helpline'. They will still produce the pens. BUT they will not say that you can use the pens to put insulin into a pump reservoir as 'this is not what they are designed for'.

If you have a UK NHS doctor they are, in theory, not allowed to tell you to use r500 in a pump because it isn't approved. My consultant really argued the case for me, and only got permission on the condition I carry a letter explaining I use a concentrated insulin.

You can only get r500 insulin on the nhs via your consultant's prescription as it is a 'named person' drug. I don't know if Lilly would sell to an individual, never asked since I couldn't afford it anyway.

IMO, the safety reasoning is b#£_@+ks. I've gone from using r500 in a pump for basal and bolus, everything automatically recorded including bg tests, to u100 in the pump for basal (not working well, flow rate is too high) and r500 on pen for bolus, which I don't always remember to record. Chance of lethal mistake severely increased if you ask me.

So, in conclusion, Lilly have decided to make our diabetes more difficult to manage. Feel free to complain to them. If you can find someone who actually knows they are stopping production of vials (most customer service people don't make a difference between vials and pens) you can explain you now can't use the r500 in a pump. At this point you will probably be told that doesn't matter, because there are no people in the UK using r500 in a pump.

Sorry.

 

[Jenny15]

I am wondering if the UK T1s who need this form of insulin via pump could get together and enlist the help of consultants to appeal to the government body overseeing the issue. Ideally the consultants would lead the process.

A Minister of Health in a Westminster-style system such as the UK, NZ, AU, Canada usually has the discretion to allow niche treatments if consultants make a good case for it.

The consultants can enlist the help of their College, and medical school departments, and even a group like Diabetes UK (which I know little about, admittedly.)

I have a bit of experience in NZ helping people with rare diseases to get things like this to happen. It's hard work but worthwhile. You who need this insulin delivered this way virtually have a "rare disease." At least in the context of how to get government action you do.

If the Minister of Health says no, then the consultants can improve the quality of the case they are making, and patients can write to MPs as well.

As Churchill said: Never give up!

 

[megandlg]

Hi, has anybody had any further help with this issue, please?
My husband uses U500 in his pump, and his diabetes nurse told him she was trying to source some type of adapter to enable the insulin to be decanted from the pens into the pump cartridge. However that was over 2 months ago with no updates. He’s now only got 1 more vial in the fridge and is starting to get a bit worried.
The doctor he saw in clinic today was less than helpful and told him he’d have to go back to using the U100 insulin again, but his body was struggling to absorb the volumes he needed, which was why he changed to the 500 in the first place.
We’d love to know what solutions other people have been offered.

 

[Adamuk1001]

Hi Meg
I have an update on my issue with this.
After my Consultant telling me for months that U500 in vials was not going to be available anymore, we challenged the availability as I found out the neighbouring Health Authority were still supplying it. After threatening to go to my MP suddenly my consultant admitted it was in fact a funding issue after all ! Anyway the upshot is that the Health Authority are now going to fund it and they have ordered it from the US and I'm just waiting for delivery.
So my advice is complain complain and again !
My health authority is Basingstoke and Winchester and the neighbouring authority I refer to is Salisbury.
Good luck
Adam

 

[Seacrow]

You don't need any special adapter. In fact, you don't need anything you're not already using to get the insulin from the large vial into the reservoir. Instead of sticking the needle set (blue if you use Medtronic) onto the vial, stick it onto the pen end. You do have to use the pen syringe to move the insulin rather than the reservoir plunger, but it's that simple. So if the doctor will prescribe pens instead of vials, there's no problem.

 

[static192]

hi adam thats really good to hear great news

 

[Adamuk1001]

Surely the simplest thing is to have uniformity in decision making and more honesty from the professionals about how decisions are made.
I'm told by my consultant that I am the only patient he sees with the need for u500 in a pump so, in the grand scheme of things the money it costs for the Insulin is small.
I've never smoked I don't drink and I've never been unemployed in 42 years of work.

 

[kitedoc]

If Lilly do actually phase out their r500 insulin the whole point of politicking may become moot.
Hopefully the special supply schemes mentioned by @Jenny15 may help, but it is up to Lilly to decide whether to continue production and that is almost certain to be based on economics not need.
As daft as it sounds, in the event of no R500 being left in the world, does the 100U strength need to be infused via several sites via either a multiple channelled high capacity insulin pump or through several pumps at different body locations ?
Meanwhile research on improving insulin absorption and understanding why some persons have trouble absorbing insulin needs urgent attention.
Edit: And looking for and developing further novel forms of absorption (including intranasal, inhalational etc)