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35 members Apply to join Network contact: Adam Sutherland

Metabolic Pharmacists Group

For pharmacists from all disciplines to come together and share practice, knowledge and experience in the field of metabolic diseases
For pharmacists from all disciplines to come together and share practice, knowledge and experience in the field of metabolic diseases (less...)

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Re: Riboflavin 5'-phosphate
Thanks Adam - that's saved me a lot of work. Karen
12:29 - Wed 17 Jan 2018
Re: Riboflavin 5'-phosphate
Hi Karen; We buy from Martindale Pharmaceuticals.  250mg in 5ml, 500ml costs about £150. 30 day expiry.  A 
17:23 - Tue 16 Jan 2018
Re: Riboflavin 5'-phosphate
No experience with riboflavin-5-phophate, sorry, but on a similar-ish note - can I ask where people get liquid riboflavin from? We've managed with tablets thus far, but have some new,...
16:13 - Tue 16 Jan 2018
Re: Uridine powder availability
Afraid not very helpful here - we have one patient who was on uridine who stopped taking it because of the flavour.  
13:01 - Fri 05 Jan 2018
Familial hypercholesterolamia
Hi We are in the process of writing a guideline for familial hypercholesterolemia and I wondered if there are any guidelines that you might be willing to share? We are looking...
10:11 - Fri 05 Jan 2018
Uridine powder availability
Hi We currently obtain Uridine powder for orotic aciduria from Audor Pharma via Mawdsleys unlicenced.  This is no longer available.  What do other centres use?  Thanks in advance Laura 
11:53 - Wed 20 Dec 2017
idebenone in SURF 1 deficiency
I'm looking for any information on this; in particular, dosing advice and any experience with the new licensed prep with regards to crushing it to go down an NG tube. Or is...
16:31 - Tue 12 Dec 2017
Mannose for CDG Ib
Dear all, Can anyone advise on where they obtain mannose for CDG Ib.  I have an old document that states Novo labs but they have denied this.  Does anyone have...
11:04 - Thu 30 Nov 2017
BIMDG Pharmacist subgroup meeting- SAVE THE DATE
Dear all (who are interested), I think it would be a good idea to start up the BIMDG Pharmacist subgroup meeting again as I we didn’t meet last year.  I...
14:33 - Wed 25 Oct 2017
Riboflavin 5'-phosphate
Hi all; left field request on a Friday.  Anyone got any experience using riboflavin 5'-phosphate (instead of plain riboflavin) - one of our consultants has an idea about it being...
16:04 - Fri 15 Sep 2017