I was just wondering if anyone else was having trouble getting hold of Lorenzo's Oil? My son has been without it for just over a month now. Our pharmacy have been phoning the supplier every week but they are still saying they don't have a date yet when it will be available again. UK resident.
Lorenzo's Oil: I was just wondering if... - Leukodystrophy Su...
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Lorenzo's Oil
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Hopeforthefuture
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I sometimes have trouble so always put another prescription in when I'm down to 3 bottles.... Whereabouts in the uk are U ?
Hi I'm in East Anglia. Our GP only writes a prescription for 2 bottles at a time so always re-order when I start 2nd bottle but problem seems to be with the supplier. Thanks for your reply x
Only 2 !!! Does ur son have 50ml of oil daily ? Ask the consultant ur son sees at the hospital to write to ur GP & ask to order more than 2 at a time... My son freaks out if he doesn't have it ... Been on it 15 years ... Btw do u keep the oil in the fridge ?
He's on 30ml a day and has been on it for 4 years. Thank u , I'll chat to the consultant, how many do you get on each prescription? Yes I keep in the fridge, do u?
I get 6 bottles at a time .... I asked about the fridge because apparently now they don't have to be stored in the fridge
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