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Letrozole stopped 2023 - severe urticaria side effect????

Toppy35
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Hi I was initially diagnosed with stage 3, grade 3 left ductal carcinoma in January 2016.  After surgery, some of the chemo (not completed due to ill health and suffering with ME) and radiation I was given letrozole.  Side effects of severe pain, dizzyness and weight gain, as well as severe incontinence (feacal & urinary).  Stopped in 2023 after 8 years due to severity of incontinence. 

Two weeks after stopping I started with urticaria (initially under buttocks), then hands and wrists, now everywhere, even the side of my face/scalp and my eye was extremely sore.  Numerous visits to the doctors, taking fexofenadine (180mg) x 4 per day and also using hydrocortisone ointment, all to no avail.  I was referred to dermatology in 2024 and have been waiting ever since.  I believe it may be food related, however my reactions to numerous healthy foods are so bad that I cannot seem to target the offenders.  I am waiting for a referral to a food allergy service, but in the interim I was wondering if anyone has heard or had anything similar, or could give some advice.

My allergies that I have figured out are:

Dairy - in any form (cheese, milk, mayonnaise, cream)

gravy

curry

hummous/sesame seeds

some prepared meats, anything with additives

Could it be foods with estrogen in them?

I am currently living on salad, but feeling like a rabbit.  

Parents

  • Hello Toppy35 and thanks for your post,

    I am sorry to hear about your situation. What a difficult time you must be having. I haven't heard of such severe allergies and it is probably only when you have had various tests will they be able to get to the bottom of why you are getting all these skin reactions.

    You may want to post a question to a team of dietitians who are part of the World Cancer Research Fund as they may have some suggestions on what you can eat. I can't say whether it is because oestrogen is present.

    If you have details of the food allergy clinic I would try and chase your appointment up or ask your GP to do this for you as it is important that you are able to eat an adequate diet. Depending on where you are in the country there are various allergy clinics and if it looks like you are going to wait much longer then hopefully your GP will be able to refer you another clinic.

    I would also try and chase your dermatology appointment with either your GP or the clinic itself.

    I do hope that you know more soon.

    If you would like to talk any of this through with one of the helpline nurses then you are welcome to give us a call.

    The number to ring is Freephone 0808 800 4040 and the lines are open Monday to Friday 9 am to 5 pm.

    All the best,

    Catherine

Reply

  • Hello Toppy35 and thanks for your post,

    I am sorry to hear about your situation. What a difficult time you must be having. I haven't heard of such severe allergies and it is probably only when you have had various tests will they be able to get to the bottom of why you are getting all these skin reactions.

    You may want to post a question to a team of dietitians who are part of the World Cancer Research Fund as they may have some suggestions on what you can eat. I can't say whether it is because oestrogen is present.

    If you have details of the food allergy clinic I would try and chase your appointment up or ask your GP to do this for you as it is important that you are able to eat an adequate diet. Depending on where you are in the country there are various allergy clinics and if it looks like you are going to wait much longer then hopefully your GP will be able to refer you another clinic.

    I would also try and chase your dermatology appointment with either your GP or the clinic itself.

    I do hope that you know more soon.

    If you would like to talk any of this through with one of the helpline nurses then you are welcome to give us a call.

    The number to ring is Freephone 0808 800 4040 and the lines are open Monday to Friday 9 am to 5 pm.

    All the best,

    Catherine

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