Im diagnosed with MCAS and prescribed sodium cromoglycate for gut symptoms - this med has been life changing! however GP no longer wants to issue it saying that according to NHS this should only be prescribed for food allergies, MCAS doesn't count.
Anyone knows what exactly is the criteria? Like, is one food allergy enough, do you need a history of anaphylaxis, or some specific food allergy for NHS to issue sodium cromoglycate?
Hiya - Have you seen this thread by @PurpleNel? healthunlocked.com/ukmasto/...
Different words, but sounds like a similar clamp down, just mastocytosis. If it's anything like here in Germany, MCAS doesn't count for anything, my allergist says (and I'm sure she's right) I could hardly get anything paid for MCAS by private insurance.
The NHS site itself says 'yes' to food allergies.... but if that is theoretical or real life, and if it's a possible workaround for a doc to write that...? nhs.uk/medicines/sodium-cro...
thanks, I have, I know the chance of gp prescribing it every month is minuscule but I want to keep trying .. nhs in my region says s cromoglycate is only to be prescribed on an advice of an allergy clinic - I’ve been to A&E twice because of an allergic reaction, each time after a restaurant meal but have no known food allergies. I’m gonna ask my gp for a referral to an allergy clinic, maybe can try to get s chromoglycate this way..
Just coming back to add to this thread that in the UK sodium cromoglycate is formally approved only for food allergies. There is some evidence for its use in mastocytosis (and those patients are under the care of a consultant, which makes it easier to get it prescribed). Use in MCAS is less well evidenced (which doesn't mean it isn't helpful, just a statement about where we are with research) and when there is no consultant prescribing there is some increasing pushback from GPs, particularly since the price has risen recently.
Advice please,
over the counter antihistamines 
MRI with contrast dye
Systemic Mastocytosis and Ehlers Danlos Syndrome hypermobility. Does anyone else have this combination of diagnoses 