Florinef (Fludrocortisone)
Sue Elford (CAH Support Group Chairman) has been in constant contact with Squibbs (the manufacturer of fludrocortisone) since there was a reported shortage at the beginning of this year, when the medication was reclassified. As a consequence of the reclassification, they no longer supply stock for pharmacy shelves but will always meet customer orders.
We are told that some wholesalers (i.e. third parties) appear to be relaying false information to pharmacies, which is causing concern. If anyone is having problems, we suggest they ask their pharmacy to contact the manufacturer direct on their customer service line (01244 586250) and supplies will be despatched immediately. We are assured that all customer orders will be met and stock is now very well controlled, in order that supplies do not fall short again.
Efcortesol (Liquid hydrocortisone, often carried in emergency injection kits)
Efcortesol used to be manufactured by Glaxo Wellcome but the product
licence has now been transferred to Sovereign Medical. Sovereign say
there was a problem initially (last year) but not any longer. If
you are having problems obtaining efcortesol, we suggest you check that
your pharmacist is ordering from the correct manufacturer.
The next biennial conference will be held May 2007. Further details will be published here when they are finalised. You can now read all the talks from previous conferences on the Conference Reports page.
The next support group meeting is in September 2005. Please telephone or e-mail for details if you are interested in attending. This meeting will start at 11am. If you would like any issues raised please speak to a committee member.
Our first 'Local Meeting' was held in Sheffield in March 2004. The meeting feature a local speaker plus the opportunity to meet and chat with other local parents and adult sufferers. As soon as details of further meetings are finalised they will be publicised here and in the next issue of the newsletters. Members living close to the meeting location will receive an invitation through the post.
We hope this will be the first in an on-going schedule of such meetings. The second meeting is likely to be in Cardiff - we'll give more details as soon as they are available. If you can help organise a 'local meeting', please let us know.
The next newsletter will be available in August/September 2005.
Highlights of this issue include :-
Report of the conference
AGM reports
If you wish to contribute to future newsletters then please contact us by telephone or e-mail.
(None at present)