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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: Uridine powder availability
hey guys - sorry to resurrect an old thread but wondering if anyone had any luck recently with Uridine? Thanking you all in advance Reena
14:19 - Tue 01 Dec 2020
Levofolinic acid injection
Hi all,   Does anyone have experience of longterm daily injections of levofolinic acid for a patient with congenital (hereditary) folate malabsorption? Do any of you use a higher strength levofolinic...
10:10 - Mon 09 Dec 2019
Carglumic acid
Hi all Re Lucane brand of carglumic acid.  One of our consultants is reluctant to use so I wondered what other centres were doing. Have you switched patients?  Would you use...
15:13 - Fri 06 Dec 2019
Re: Ravicti(R) and Syringes
Hi Reena, Not such an issue for our PEG patients as they get heaps of syringes from the feeds company.  Here is Bristol for our oral patients we've made a...
08:37 - Thu 13 Jun 2019
Re: Creatine Transporter Deficiency
Hi Reena, Sorry but no experience here.  Please do let us know what you find out as would be good to included in the metabolic formulary.  Current in draft writing...
08:20 - Thu 13 Jun 2019
Creatine Transporter Deficiency
I'm aware that this is a huge long shot.... I was wondering if anyone has any experience of the use of S-adenosyl Methionine (SAM) for creatien transporter deficiencies? Can this...
15:11 - Wed 12 Jun 2019
Ravicti(R) and Syringes
Hi there, Has anyone started using Glycerol Phenylbutyrate?  I understand we need to use a new oral syringe daily - these are not reimbursable by our Health Service in Ireland...
09:29 - Mon 03 Dec 2018
Use of thickening agents for meds
Hi, Wondering if anyone has experience of adding a thickener to arginine liquid and/or sodium benzoate liquid to aid swallowing? Any thoughts appreciated. Thanks, Martina, Aberdeen.  
16:26 - Wed 03 Oct 2018
Re: Uridine powder availability
Hey all; We recently had a sibling of the patient I referred to above.  We've gone back to the family and said that we can't obtain it anymore so we...
15:06 - Tue 14 Aug 2018
Galactose
Hi all, Does anybody know where I can obtain galactose from?  I'm thinking it only comes as a powder Thanks, Will Bristol Royal Hospital for Children
14:50 - Tue 14 Aug 2018