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Thread: I can't get a proper diagnosis without doctor cutting my face to do a biopsy???

  1. #1
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    Question I can't get a proper diagnosis without doctor cutting my face to do a biopsy???

    Severe face rash came on suddenly last week, saw 3 doctors, one said it's a fungus infection, another said it's an allergy, and dermatologist said she doesn't know without doing a biopsy and doesn't want to cut my face (yet), she gave me Rosiver cream and an antibiotic (dozycycline). No improvement yet. The burning is soooo bad, I can't make it stop. I've never had skin rash or acne or anything ever before, I'm 54 yrs old, female, and have had clear skin all my life. Any thoughts on what you think this could be, and what might help, I'm so devastated and feel so lost, I want answers and a diagnosis would be better than not knowing. The rash is on both side of my faces, nowhere else on my body.
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    Senior Member Brady Barrows's Avatar
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    Rosiver is the Canadian name for Soolantra. You may want to read the King of Soolantra threads to understand how Soolantra works and many reports in this thread says Soolantra works. To understand what is involved in a diagnosis of rosacea read this post. You may want to read what to ask your physician? Basically, one of the methods of diagnosing rosacea (or other skin condition) is treating the condition with a prescription or other method and seeing the response, i.e., Treat with Soolantra, if it works, ergo Demodectic Rosacea. If the treatment doesn't work the practitioner tries another method and see if it works. You should be aware that it takes months usually for Soolantra to work. It usually gets worse before it gets better if you read the King of Soolantra threads you will note this is repeated many times by users of Soolantra. You will probably know in a month if Soolantra is for you. Misdiagnosis is not uncommon with dermatologists, but the majority of rosaceans report a correct diagnosis. My recommendation is to have your dermatologist rule out Rosacea Fulminans, a rosacea variant.
    Last edited by Brady Barrows; 3rd July 2018 at 11:34 PM.
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    Default Thank You!

    Thank you so very much, your reply has been so insightful and useful for me. I really appreciate all the info you provided. I wish I were sitting across the room from you, I’d give you a great big hug.

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Minskore View Post
    Thank you so very much, your reply has been so insightful and useful for me. I really appreciate all the info you provided. I wish I were sitting across the room from you, I’d give you a great big hug.
    You could join the RRDi which would make me happy.
    Brady Barrows
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    Default Join Us link on irosacea website

    ...goes to "irosaceaa.org/register" URL instead of "irosacea.org" URL.

    I also have a question, Brady. Do we ever do any cold calling or events to raise money for rosacea, or specifically for the RRDi or the NRS?

    Maybe we could even post DONATE buttons on our articles about rosacea so that people could donate.

    I would love to help with this as it would be a great way to essentially volunteer for what might help be close to a cure one day...or at least more improvement :p

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    Default That seems very sudden and aggressive. That gives me a bit of hope that...

    ...it's not rosacea.

    As far as my experience has been and with regards to most people who I know with rosacea, that rosacea tends to come on slower.

    Am crossing my fingers for you.

    I would obv try EVERYTHING in my environment. Change your detergent, soaps, try to keep things clean like blankets and the such.

    It might very well be something you're allergic to like nickel or something of the sort that has been introduced in an environment you're in.

    The toughest thing is to try to be PATIENT as you deal with this and hopefully you can figure this out and attack it. I know it's super-tough, but you seem to have a terrific attitude about this situation and any other ideas you come up with or treatment regimens, please keep us updated. Who knows? Since we all have crazy, unpredictable skin ourselves, we might need your analysis and treatment regimen down the road, esp if it's effective.

    Am also here for support as we all are. I am giving you a big hug right now over the web :p

    Please PM me or post on here to let me know how you're doing and what it ends up being.

    Warmest,
    Mike

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by mickwayne View Post
    ...goes to "irosaceaa.org/register" URL instead of "irosacea.org" URL.
    I also have a question, Brady. Do we ever do any cold calling or events to raise money for rosacea, or specifically for the RRDi or the NRS?
    Maybe we could even post DONATE buttons on our articles about rosacea so that people could donate.
    I would love to help with this as it would be a great way to essentially volunteer for what might help be close to a cure one day...or at least more improvement :p
    mickwayne,
    There are rosaceans who donate to the NRS, such as the owner of this forum, David Pascoe, who was instrumental in donating $16K to the NRS. Without a doubt rosaceans prefer the NRS. The NRS is founded and run by non rosacea sufferers. What does the NRS spend most of its donations on? I have been following for a long time. Since 1998 through 2016 the NRS has received in donations $13,898,646. The majority (60%) of the donations are spent on two private contractors (two corporations) that are owned by the founder and director of the NRS, Sam Huff. About 10% of the donations are spent on rosacea research which amounts to $1,403,031 (which is significant since the NRS spends more on rosacea research than any other organization). However, to put this in terms you can understand, for every dollar donated to the NRS 60 cents is spent on two private corporations owned by Sam Huff. Ten cents is spent on rosacea research. The remaining 30 cents is spent on everything else. Here is the data; you can do the math yourself if you prefer.

    However, the RRDi was formed completely separately from the NRS and is founded and run by rosacea sufferers. The RRDi has tried to get corporate sponsors like the NRS has done but all the pharmaceutical companies, i.e., Galderma, Allergan, Bayer, Cutanea, Beiersdorf, colorscience, prefer to donate to the NRS. Rosaceans rarely donate to the RRDi. If you want to change this volunteer. Volunteering is not something most rosaceans want to do. They prefer how the NRS is spending the money. I have tried to gather together rosaceans into a non profit organization but the members don't post, they don't volunteer, nor do they donate. If you want to help, join the RRDi and volunteer. Sure could use the help. You can donate by clicking here. By the way, it is gracious on David Pascoe's part to let me post these words in his forum. Mucho Mahalo to David Pascoe. RF happens to be the most active rosacea forum. I have posted more posts in RF than in the RRDi because very few if any RRDi members post in the RRDi member forum. Weird, isn't it?
    Last edited by Brady Barrows; 6th July 2018 at 07:50 AM.
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