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Thread: Rosacea that has no flare-ups, not much relief - has been constant for 3 years

  1. #1
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    Default Rosacea that has no flare-ups, not much relief - has been constant for 3 years

    Hello. I am new here. My rosacea experience has been really hard. I have very painful, cycstic rosacea. It has been really difficult for me emotionally, as well. I have not found my triggers, but really feel that hormones have a part to play. I was just telling my husband that this disease has really changed my face. The only relief I have had, has come from taking 100 mg of doxycycline twice a day. It starts to help around the 3-4th week. When I go to a lower dose, it does nothing. I have tried 4-5 ointments, creams, gels, foams. I have not found any of those to be helpful. My last doctor order was to take Finacea in the morning and Soolantra at night. Have had no improvement. Have all but given up. Any helpful suggestions?

    I have read enough on here to know that everyone's experience is different. I understand what works for one person isn't guaranteed for another. Just really in need of support and insight. I am far from a negative person, but I must admit, this really has me discouraged. I have pretty public responsibilities, so I can't hide out at home, like I think I want to...

    Thank you so much.

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    Hi there

    I know how you feel. I have ocular and minor facial flushing.. Doxy only really helps at the 100mg dose for me too. I have the 40mg tab I take when I'm doing well but after a while, I need another 100mg. Have you looked into Soolantra at all? Also taking probiotics with a really low sugar no grain diet?

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    Quote Originally Posted by Faith1989 View Post
    Hi there

    I know how you feel. I have ocular and minor facial flushing.. Doxy only really helps at the 100mg dose for me too. I have the 40mg tab I take when I'm doing well but after a while, I need another 100mg. Have you looked into Soolantra at all? Also taking probiotics with a really low sugar no grain diet?
    Yes, I mentioned above that my last doc appt months ago she put me on Finacea and Soolantra. It hasn't helped at all. I have just started taking a probiotic....and am willing to try diet changes. I still put my sugar in my coffee, but just a couple days ago, I decided to cut out desserts, etc.

    I go to Opthamologist on Thursday to see if I have it in my eyes. Really hoping I do not.

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    You can try tea tree oil mixed with a carrier oil 1:1, or a sulfur cream.

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    I agree with Maria. Doxy, low carb, and tea tree oil are the only things that help me! Even if I'm doing the doxy and tea tree oil if I eat any sugar (minus a LITTLE fruit) I will flare😩 It's a tough life. I don't think others even realize how hard and frustrating this can be. There is always hope though.

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    Quote Originally Posted by MariaSt View Post
    You can try tea tree oil mixed with a carrier oil 1:1, or a sulfur cream.
    I have been terrified to try ANY oil because they seem to make it worse....But I am not sure about the tea tree oil.

    Since I have never had anything help, except for Doxycycline (which takes quite a while) - do any of you have experience that when you do find something that helps, it helps/improves in days??? Or is that totally dreaming??

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    Quote Originally Posted by Faith1989 View Post
    I agree with Maria. Doxy, low carb, and tea tree oil are the only things that help me! Even if I'm doing the doxy and tea tree oil if I eat any sugar (minus a LITTLE fruit) I will flare😩 It's a tough life. I don't think others even realize how hard and frustrating this can be. There is always hope though.
    Thank you for your counsel. It does feel different to speak with people that understand how physically and emotionally painful it can be. Thank you.

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    Quote Originally Posted by heatherbotswana View Post
    Hello. I am new here. My rosacea experience has been really hard. I have very painful, cycstic rosacea. It has been really difficult for me emotionally, as well. I have not found my triggers, but really feel that hormones have a part to play. I was just telling my husband that this disease has really changed my face. The only relief I have had, has come from taking 100 mg of doxycycline twice a day. It starts to help around the 3-4th week. When I go to a lower dose, it does nothing. I have tried 4-5 ointments, creams, gels, foams. I have not found any of those to be helpful. My last doctor order was to take Finacea in the morning and Soolantra at night. Have had no improvement. Have all but given up. Any helpful suggestions?

    I have read enough on here to know that everyone's experience is different. I understand what works for one person isn't guaranteed for another. Just really in need of support and insight. I am far from a negative person, but I must admit, this really has me discouraged. I have pretty public responsibilities, so I can't hide out at home, like I think I want to...

    Thank you so much.
    Hi,
    I know its easy for me to say but don't give up, keep trying different things until you find something that helps. I have a friend who has cystic Rosacea and she has given up finding a cure, this is because she has no pain with it and accepts her condition. The pain is telling you to keep going. I also have painful Rosacea, I experiment with different products/treatments and will do so until I find something that helps me live a normal life, we should not have to put up with pain.

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    Default what about spironolactone?

    Hello. I am new and this is only my second post. I saw an ophthalmologist on Thursday and had it confirmed that I do have ocular rosacea, along with my severe rosacea.

    I am wanting to know if any of you have experience with spironolactone? A friend asked me if I had heard of it. Right now, against my previous wishes, I had determined that I am going to have to live on Doxycycline. I don't get flare-ups. I just have ever-present rosacea. I need relief. I really, really did not want to live on doxycycline. Less than 200 mg/day does not control my rosacea. So?? What about spironolactone? Have any of you ladies around my age tried that with success? failure? pros? cons? I am 47 and was diagnosed with first episode about 3 years ago.

    Appreciate your help and support.
    Heather

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    Hi

    I was going to send you a PM but I guess I'm too new of a member.

    May I give you my email?
    I'm going through something similar
    Thanks

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