Post Hormonal Therapy Acne - after stopping Lupron

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MTG
MTG Member Posts: 646
edited August 2019 in Hormonal Therapy - Before, During, and After

Help! Im hoping someone can shed some light.

After almost 7 years on Lupron, I finally stopped and within 2 months of missing the next shot in the cycle I broke out in a full body rash; within 3 weeks after that I started getting acne, pimples, postules on my face. The body rash never came back but the acne / postules does - sometimes with a vengeance. And its now 2 years later.

Ive seen 3 dermatologists, consulted with a 4th, had biopsies and saw a holistic doctor (who just wanted to sell his products), but they were no help. So Im turning back to this forum.

I strongly suspect these outbreaks - which vary significantly in severity and scope but always start on the lower face and jaw line - are linked to hormones and sugar (in all its various forms, including the artificial stuff). And I try to take anti-antrogen supplements. But Ive not had much progress.

Has anyone else encountered this problem?

Does anyone have any suggestions?

PS gross photo attached of my current, particularly bad outbreak which covers my face, behind my ears and lower jaw line, with even a couple onmy eyelids

image

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  • Musicgal
    Musicgal Member Posts: 21
    edited August 2019

    image

    I can relate to your pain, frustration etc. I posted part of my three years of suffering after 10 years of Tamoxifen- I too believe Androgens are the likely cause because they stimulate the sebaceous glands. I tried EVERYTHING.

    Good news/bad news: you can have a full cure, as well as beautiful, soft skin. Bad news( sort of- nothing compared to chemo etc) is Isotretinoin (Accutane.) I am going the slow, low dose regimen...Month 1 at 20mg/day, Month 2 at 30mg/day, 40mg for remainder, up to 8 months. Two derms made me feel bad, and my primary care would not prescribe...so, I am doing it myself. Side effects are manageable at this dose, and like BC treatment, I stay ahead of chapped lips (Dr. Dan's Cortibaum every 2 hours,)and joint pain. I am having blood work ( cholesterol and liver) next week.

    Isotretinoin is the ONLY medication that treats all four types of acne, but don't watch all the YouTube video from 20 somethings..

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  • MTG
    MTG Member Posts: 646
    edited August 2019

    Its nice to know Im not alone. This is horrible! And itchy ! We cant be the only ones going thru this but my bet is that most feel its a skin issue unrelated to BC and dont even check this board any more. Frankly, I didnt think of it until just the other day.

    Im not a big one for prescription medicine so accutane would be a last resort.... but I may get there.

    Instead of treating the acne, Im hoping to find a way to treat the underlying problem and use herbal supplements instead of prescription medication. Right now, Im starting on a pile of “anti androgen” vitamins - e.g. bereberine, licorice, reishi, etc plus sugar support pills (like diabetics take) and a low glycemic diet. But that means a major dietary change and cutting out healthy things like fruit and yogurt (used to eat tons) and unhealthy fun things like mixed cocktails and champagne. (This latest breakout was directly due to brunch and 1/2 a bottle of bubbly.) Im just not certain I can do it. When you say you tried everything, did you do anything along this approach

    Ive also decided Dermatologists were the wrong way to go and will try an endocrinologist next.

    Please keep me posted re what you learn on your path and how it goes. By the way, another less assertive prescription med which is supposed to help lower androgens is Spironolactone. Its a diuretic. (Im thinking it cleanses the system but not certain; I will see if drinking tons of water helps.)

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  • Musicgal
    Musicgal Member Posts: 21
    edited August 2019

    good luck! And good for you too.

    I have been reading peer-reviewed journal articles on all of these topics. My GP, who I like and trust, was horrified at the thought of Accutane, especially in an adult. She, like so many, are operating on old information.

    Also- the underlying problem is now enlarged, diseased sebaceous glands- only a small percentage of the millions we have, but enough to cause non-stop production of our natural oil. I believe Androgens did the job of distorting my glands, but that problem is irreversible, except with Accutane. It is the only treatment (AAD, 2014) that can actually shrink the glands.

    My sense after years of searching and reading ( and Turmeric, and lemon, and evening primrose oil and twenty other things, all organic food and no alcohol) is that there really is only one way to decrease sebum production, and to shrink the sebaceous glands back to normal for good- 97% achieve this result if two rounds are included, and a small percentage need a second.

    The bad press surrounding this Vitamin A formulation has all been disproved by large, clinical studies, and the AAD put out a position paper that Accutane should be a first line treatment for severe cystic /nodular acne. Their position is that lots of both young and older people have suffered unnecessarily, and that this sort of acne can have serious psychological effects- I certainly can agree- I have been hiding from the world for the last year+ when mine progressed. The European association has adopted the same position. Yes, there are significant side effects, but nothing like the news blew it up to be, and it was taken off the market. I wish I had known about all I learned two years ago!( Does not cause depression or IBS.)

    I hope what you are doing works! But thousands of Accutane/Isotretinoin users will tell you it might help for a little while, and then it will keep coming back, getting progressively worse and more painful- physically and mentally. And finally, their dermatologist says it is time for the last resort, when now they are saying it is first line treatment.


    There are at least three forums involving acne on here, and I wonder if the moderator would combine them. I predict this will be of epidemic proportions when 300,000 women finish ten years of Tamoxifen this year.

    Mine started with a bump above the skin( lower face-)( never had any acne until age 55), and until I started Isotretinoin two months ago, I had forty large ,very painful lesions filled with tiny imbedded papules and raised channels of sebum ( like Voles make in the ground.), and ferocious headaches and dizziness from the sebum filling my scalp.(OMG- I tried the Apple Cider Vinegar rinse to open the clogged pores on my scalp- the irritation from one diluted rinse sent my glands into warp speed. )

    My headaches and dizziness and oily hair went away on day four! My last three face lesions are in their last stages, and I have not gotten any new cysts, just junk coming out of my skin everywhere!!! Hand wash three to four times daily to softly wash away the guck- who knew we had all this dirty junk in our skin!!!

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  • MTG
    MTG Member Posts: 646
    edited August 2019

    You sound so much like me ! Never any acne. Always take/took pride in my appearance. More itchy than painful but bad enough that I keep Solarcaine by the side of my bed....... Anyway, I am hugely appreciative of your input and the Accutane suggestion. I fully intend to keep it in my quiver as an option. Thanks again

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  • Musicgal
    Musicgal Member Posts: 21
    edited August 2019

    be careful about the itching/rash eh? We Survivors don't need to expire from anaphylaxis, after all our treatment! Have you tried an antihistamine? Then you would know if it was an allergy.

    I will send an after photo in 3 months

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