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Thread: There is no cure, that's hard to accept.

  1. #1
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    Default There is no cure, that's hard to accept.

    Hello all!

    I think I may have joined this forum before, but couldn't remember what username I had (duh) so thought I'd just register again, plus it's been a while since..

    A brief history of my rosacea: (a long story long)

    One hot day at work a colleague pointed out that my face looked unusually red, and ever since then (I think about 2 years ago now) the redness has not gone away. I've tried pretty much every lotion, oil, cream, diet, pill, and prescribed topical and oral medication (actually, not tried all meds) all with short lived success only for my rosacea to go from bad, to good, to bad again, to ok, to worse. You name it, I've likely tried it, with a lot of the recommended products I got from this forum!

    So....my rosacea started as most classic cases do - bright red, itchy, cruddy forehead and cheeks. I've always had problem skin - very dry and flakey, but nothing like this. Today however, my forehead has pretty much completely cleared. I can't explain why. The area does still get red after a shower, and feels a bit itchy sometimes but it's NOWHERE near as bad as it was 2 years ago. I can look in a mirror and honestly say my forehead doesn't bother me. (I never thought I'd ever use those words in a sentence).

    However, my cheeks still give me grief. I read on another thread that some people find their symptoms are worse on one cheek than the other. This is true for me, my right cheek currently is a nightmare. The left one is slightly red and rarely ever gets any pustules, but the right one is blazing red with several blotchy areas and pustules. What's really worrying me is that I think it may be spreading to my nose, plus my eyes are extremely sensitive and dry all the time.

    Currently I've been prescribed Minocycline Hydrochloride (Minocycline 100mg modified-release capsules) taken once a day (I take in the morning before breakfast on my way to work) and I've really gone back to basics with all my skin care products and my diet is the best it's ever been, EVER!

    I will add my current routine/meds to my signature if anyone's interested, once my account allows me to (new user restrictions). But here it is anyway -

    Meds: Minocycline Hydrochloride (Minocycline 100mg modified-release capsules) 1 capsule per day
    Skin-care: Simple Pure Soap Bar for Sensitive Skin, Boots Simply Sensitive Day Moisturiser SPF15
    Diet (general): No dairy, goats milk, whole grain pasta/bread, brown rice, lean chicken, dark chocolate, plenty of veg (no carrot), eggs, tuna, cod, pure green tea, lots of water, Free From butter (no dairy, wheat, gluten), no added salt or sugar, no fast food, no spicy food, etc.....(you get the idea)..



    Sigh...........I suppose my ultimate point is - I will never accept this condition. To go from (literally) one day being fine, to the next left with this........is devastating. How is that even possible!? I've been suicidal in the past because of it, and nearly came close once. And even though now I try and keep a smile and get on with it, I'll never be the same and I'll admit that I'm currently seriously depressed about it. People's reactions walking down the street, or sat opposite on the train, make me feel disgusting. This isn't me...

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    Apologies, I think I should have posted this thread in the Newbie Introduction page!

  3. #3
    Senior Member nat007's Avatar
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    Hi Andeep

    I'm sorry you are also dealing with the ups and downs (not meant as an understatement) of rosacea.
    I posted this in another thread here just yet (http://www.rosaceagroup.org/The_Rosa...ow-do-you-cope)

    "I think everyone reading here or writing here can relate to this feeling of depression and devastation you are feeling now. It is a terrible disease to have, I think so too. Many here have been where you are now emotionally, me included. All I can say is that often it will get easier with time. You are just diagnosed and will need a lot of time probably to come to terms with what these diagnosis might mean. There are however lots of things you can do to impact and improve your skin problems with. For most here, things also will become a bit easier with time, but it's tough for sure.
    For me, I had the same feelings at the time, I managed to finish university but let go of almost everything else; including leading a social life. Rosacea, fretting over my skin and trying to control my symptoms took all of my energy. But things have improved for me and for many people I know who have long term rosacea. I'm not sure if you are religious, but either way, you have all of eternity to be dead. It's always worth trying for as long as you can to improve your life here, for all you know there is eternal nothingness. My dad told me during the worst years, when I flushed literally 24/7, that even if I had 15 minutes a day where I enjoyed watching something on tele or reading something or laughing about something, it would be worth going on.
    You are just at the start of all this and many people have improved their rosacea with medication, natural treatments, diet, lifestyle changes etc etc. Please try to stay positive and perhaps start reading about the treatment options that are out there. Keep posting here, and feel free to pm me if you feel very lousy and need an ear.
    Don't give up things will get a bit better again, take care"

    In your case, there might still be medication out there, other than antibiotics, that can help you. I have a blog and mention some anti flushing/redness medication there, including clonidine, propranolol, remeron (very potent for many rosaceans who I know who use it), antihistamines. There are many natural anti inflammatories mentioned there too. Maybe it will help you a bit. If nothing helps, there is a dermatologist in London who knows a great deal about rosacea and has a large set of medications he uses against it, he is a professor in dermatology in Hammersmith Hospital named Dr Tony Chu.

    all the best

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    Hi nat, thanks for your reply and the link!

    My previous post may come across a bit dramatic, I guess at that point in my life my rosacea was affecting the most. I started giving up, I felt exhausted and let down by everything I tried and not getting anywhere. Not to mention the amount of money I've wasted on pointless creams and pills. My social life was non-existent and any contact I did have with people was wrecked with paranoia. I locked myself away for 6months and tried to focus on getting my face back. It never happened.

    I'm more positive about it nowadays, I've adopted an empathetic attitude...now being more aware of conditions such as these I notice other people and their afflictions. Things could be a lot worse, and there are plenty of people in this world with a harder life than me.

  5. #5
    Senior Member nat007's Avatar
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    That's good to read Andeep! It's a difficult process, but human beings are resilient and even though we might dread certain things and think we'll never get used to it (like a burning red face), most still do eventually and find ways to live with it.

    all the best

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    Hey Andeep,

    I'm really sorry to hear that you've felt so terrible about your Rosacea =/

    Don't give up hope though, there's always new treatments to try! Maybe theres something that you haven't tried yet that will make a difference!

    Here's what I would recommend!:

    If you're not using a moisturizer with niacinimide, you should definitely switch to that. Research has shown that it's highly effective at improving moisture, dryness, and skin barrier function. http://www.truthlyapp.com/popular?ca...mide%2Crosacea

    Have you tried azeliac acid? It's generally more effective than metrogel http://www.truthlyapp.com/popular?ca...acid%2Crosacea

    What about getting tested for SIBO? There's a very strong link between SIBO and rosacea. If you can get your SIBO in check (not easy, I have it too =/) you can really help your rosacea. http://www.truthlyapp.com/truths/143

    Finally, get tested for dermodex while it's still a correlation, there's a very strong link between demodex and rosacea, espescially papulopustular rosacea. If you tested positive for dermodex, you can treat the dermodex with tea tree oil or invermectin, both are highly effective. http://www.truthlyapp.com/popular?ca...odex%2Crosacea

    The antibiotics you're on definitely help, but they are treating the inflammation, not the source. Hopefully this helps!

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