Anyone using metacresol free insulin please?

[Miriam C]

My daughter 22yrs dx 2003 (780 pump) has Mastocytosis and addisons too. Went on pump 2004, i figured she must have had issue with longacting as results were spectacular almost immediately. Since August ‘21 we have been begging for help as her intolerance of shortacting insulin has increased. Local doctors spoke to a mast cell specialist in US last week who says the main culprit tends to be metacresol. All NHS insulins have this but in the US there are some that dont so they are looking at importing one. Has anyone any experience please? We dont know for sure it is the metacresol but i expect we will get one bite at the imported insulin cherry. Thanks a million xxx
p.s. for those with mast cell tendencies we have found aggressive correction bolusing that cuases increased resistance was a flag to intolerance.

 

[Antje77]

Hi @Miriam C , and welcome to the forum.
I don't know anything about your issues but it seems like another new member, @gagnad has posted about similar issues to yours, and she's from the US: https://www.diabetes.co.uk/forum/threads/allergic-to-all-insulins.186496/

 

[gagnad]

My daughter 22yrs dx 2003 (780 pump) has Mastocytosis and addisons too. Went on pump 2004, i figured she must have had issue with longacting as results were spectacular almost immediately. Since August ‘21 we have been begging for help as her intolerance of shortacting insulin has increased. Local doctors spoke to a mast cell specialist in US last week who says the main culprit tends to be metacresol. All NHS insulins have this but in the US there are some that dont so they are looking at importing one. Has anyone any experience please? We dont know for sure it is the metacresol but i expect we will get one bite at the imported insulin cherry. Thanks a million xxx
p.s. for those with mast cell tendencies we have found aggressive correction bolusing that cuases increased resistance was a flag to intolerance.

H

 

[gagnad]

Hello. I posted last month that i have type 1 for 39 years and i posted some of my difficulties tolerating insulin. I also found out i have mast cell activation disorder from a top doc and also was told metacresol was strongly adding to my difficulties with all insins
I also have searched for insulins without metacresol. Our stories are similar. I dont think there are shorting acti g insins without metacresol. I live in the US and have suffered for years; going to institutions who never understood or helped. I would love to be in touch with you. Perhaps we could help each other.

(Edited by mod for online safety)

 

[gagnad]

My daughter 22yrs dx 2003 (780 pump) has Mastocytosis and addisons too. Went on pump 2004, i figured she must have had issue with longacting as results were spectacular almost immediately. Since August ‘21 we have been begging for help as her intolerance of shortacting insulin has increased. Local doctors spoke to a mast cell specialist in US last week who says the main culprit tends to be metacresol. All NHS insulins have this but in the US there are some that dont so they are looking at importing one. Has anyone any experience please? We dont know for sure it is the metacresol but i expect we will get one bite at the imported insulin cherry. Thanks a million xxx
p.s. for those with mast cell tendencies we have found aggressive correction bolusing that cuases increased resistance was a flag to intolerance.

 

[gagnad]

Hello Miriam. I have terrible issues very similar to yours I am allergic to all insulins for 39 years and have MCAS i live in US. And see mast cell top specialists. Please contact me


(Edited by mod for online safety)