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    • CommentAuthorSheila
    • CommentTimeFeb 11th 2017
    Lindy - If you see this post, can you say whether you are still taking. This ?

    And are you NOT a super responder now ?
    • CommentAuthorlindyd
    • CommentTimeFeb 14th 2017
    Hi Sheila
    Yes I still take ketotifen. It has helped my reactions a lot. I still have issues but can eat a wider variety of foods :o)
    If I forget to take a tablet I realise after about 3 hours!!
    Lindy xx
    • CommentAuthorSheila
    • CommentTimeFeb 14th 2017
    Sorry I spelt your name wromg. How did you get ketotifen ?
    • CommentAuthorlindyd
    • CommentTimeFeb 15th 2017 edited
    I get it on prescription from my GP Sheila, the brand name is Zaditen xx
    • CommentAuthormcpare
    • CommentTimeMar 23rd 2017
    Hi lindyd,

    I am curious to know you have been taking Zaditen for how long? I am wondering if it loses it's effectiveness over time. This seems to have happened to teefee61 who was posting on these boards a while back. I am quite certain I have SS and have ordered the Royal Prince Alfred Hospital Elimination Diet Handbook to help me in doing an elimination diet. I suspect I have histamine intolerance as well. I am taking notes about medication, enzymes and supplements that have been reported to be helpful in the event that I am very intolerant and am too limited in my food choices. This board is a wonderful resource.
    • CommentAuthorlindyd
    • CommentTimeMar 27th 2017 edited
    Hi mcpare
    I have been taking the ketotifen for a number of years now. I've been around this site for nine years now.. I wasn't on it when I joined so maybe 6 or 7 years..I lose track!
    I started taking it after learning about it from teefee (I'm still in touch with her on facebook).
    I have found no lessening in its effectiveness over time. Like teefee I do find I have spells when I am more reactive but this passes. Although I am post menopause I am convinced my more reactive phases are linked to hormones as I have tracked them and they follow a pattern.
    Not everyone takes to ketotifen..some find it makes them too sleepy. Before I started to take it I had been on ceterizine for about 20 years so sleepy was my default setting so the ketotifen made no difference! I will swap the slight side effects for the benefits any day!
    It also take quite a while for the benefits to build up and take effect which spooks some people and they give up too soon..
    I also spent a fortune on probiotics, and various other supplements to help heal my gut so these have complemented the ketotifen.
    I now eat a lot wider variety of foods than I could and I can tolerate perfumes/fabric softeners better. For instance I sat next to my daughter in her car on Saturday complete with her fabric softener/body spray. I did feel the the end of the journey my voice was croaking slightly and my eyes were blurring but I coped. At one point I wouldn't even have been able to sit in the car...
    I tend to forget how much it is helping until I forget to take one...after a few hours I get a distinctive fluey feeling.
    I also have histamine intolerance.
    Lindy xx
    • CommentAuthormcpare
    • CommentTimeMar 28th 2017
    Hi lyndid,

    Thank you for taking the time to respond. I have just finished collecting my poop for a comprehensive stool analysis and just returned from the lab for a SIBO test. Once leaky gut and SIBO are ruled out or addressed I will move on to suppements that help methylation. Is teefee doing better, I read some of her posts on the board where Ketotifen had losts its efficacy? I am really glad you are doing better - what a difficult condition. I LOVE fruits and vegetables.

    • CommentAuthorKiwi
    • CommentTimeApr 14th 2017

    Are you gluten free?

    • CommentAuthorlindyd
    • CommentTimeApr 21st 2017
    Hi Kiwi
    Yes I am x