Hi heather ,
That was kind of my point but didn't put it as well as you
Without his work I would never have known that there may be a name for my illness .
Yes , steriods do work , but as you say the side effects are not viable long term . I am a case in point xxxx It controlled my reactions , but I put on 3 stone 42lb in 6 months , it unmasked diabetes and my adrenals havent yet recovered . BUT Steriods revoloutionise my symptoms . They day steriods can be developed that work with no side effects . will be first in the que . I wander if I was helped into stability by them ???? I will never know .
For doctors who do not understand idiopathic anaphylaxis , Dr Greenburgers work helps them understand .
Essensailly we now have the drugs he would ahve loved to ahve had to treat us with
My statement that the guidance was unhelpful , was that , unf some doctors used them wholesale not in the manner described by Dr Greenburger and his colluges . Steriod sparing ( reducing ) is recognised as being very difficult for patients with idiopathic reactions . Now ( here in the UK ) other drugs are given to patients who can not wean safely . The choices are :- cyclosporine , an immune surpressant used post transplant ( neoral ) and methotrexate , an immune surpressant with less kidney implications . I ahve high blood pressure and diabetes , so if I go into another snowball of reactions , methotrexate is the recommended drug of choice for me .
When I was on steriods I was wholly undermedicated . In an anphylaxis I have IV hydrocortisone ( solu medrol ) 200mg and 40mg for a week , then wean down .
My bones survived this , possibly because I was pouring pints of milk down my neck due to thirst from the emerging diabetes .
I am glad DR Greenburger helped you . I had hoped I would meet him , because of the influence his work had on my understanding of what was happening to me , a good while before I heard of mast cell activation syndrome
many hugs
Josie