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The next Monogenic Diabetes Training Course "Right diagnosis, right treatment" hosted by Prof Andrew Hattersley and Prof Maggie Shepherd will take place on Wednesday 20th - Thursday 21st - October 2021 online in a virtual format.

Registration is now live and can be booked here

RILD Building, Royal Devon & Exeter NHS Foundation Trust, Barrack Road, Exeter, EX2 5DW, UK

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UPDATE: 16/07/2020 Update regarding Glibenclamide supply for UK patients with neonatal diabetes due to KCNJ11 or ABCC8

The following options are now available for accessing Glibenclamide in the UK:

Option 1.

Mawdsleys are importing Glibenclamide from a company called TEVA in Canada. They can supply 5mg or 2.5mg tablets to any pharmacy (including local / community pharmacies) as long as that pharmacy sets up an account with them. Accounts can be set up by the local pharmacy emailing or phoning Mawdsleys via unlicensed@mawdsleys.co.uk or 0161 742 3482. This is currently the cheapest option we have been able to find. NHS costs are approximately 37p per 5mg tablet. 100 x 2.5mg tablets – £28.12 + VAT. 100 x 5mg tablets – £31.54 + VAT.

Option 2.

Pharmacies and hospitals can purchase directly from

Pharmaceuticals Direct Ltd, Ambe House, Commerce Way, Edenbridge, Kent, TN8 6ED

Mobile: + 44 7828 266 291 www.pdluk.com

Costs are: Glibenclamide 2.5mg 60s – £8.00, Glibenclamide 5mg 90s – £14.00

Please note that the current packs are an imported special from Europe and the language is French on the pack. On a small value order there is a delivery charge of £3.95

Option 3.

Glibenclamide 5mg has also been imported via Northumbria Pharma and can be ordered via an online pharmacy or delivered to hospital pharmacies; please contact samer@taslaq.com for further details.  NHS costs are 50p per 5mg tablet.  Northumbria Pharma are actively working on manufacturing glibenclamide (the licensed product) in the UK but we are not currently sure about the time frame or likely cost.

We will continue to update the website with any new information.

Recommendations for patients with KCNJ11 and ABCC8 neonatal diabetes currently treated with glibenclamide that can no longer access this drug:

  • For blood glucose control  (if cannot get hold of glibenclamide) we are suggesting GLIMEPIRIDE is probably the best drug to use.
  • We suggest initially transferring by replacing 5mg glibenclamide with 2mg glimepiride (you can get it in 1, 2, 3 and 4mg tablets).
  • We do not have a lot of experience and would be very keen to hear how things go on this alternative.
  • We do not know if there will be a difference in the availability of sulphonylurea to the brain – it would be interesting to ask families if they see any difference on Glimepiride. Any change is likely to be slow (over days)  after transfer and not immediate because of the long half-life of glibenclamide.
  • We know in these patients there is very little danger of hypoglycaemia even with very high doses so it is worth considering going higher than this dose if either the glucose or the CNS suggests it might be needed.
  • Other sulphonylureas are likely to control blood glucose -doses should be calculated from the maximum doses (eg Gliclazide 80mg = Glibenclamide 5mg)

Contact:

If any questions contact Prof Maggie Shepherd (m.h.shepherd@exeter.ac.uk) or Prof Andrew Hattersley (a.t.hattersley@exeter.ac.uk)