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Thread: Overwhelmed and dermatologist seem to be playing lottery with my case

  1. #1
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    Default Overwhelmed and dermatologist seem to be playing lottery with my case

    Hi everyone,

    I'm 33 years old female. I have officially been diagnosed with rosacea about 6 months ago. At fist I thought I had a case of adult acne. I went to a endocrinologist who did a complete blood test and told me I was fine (even though I personally know that my hormonal cycle plays an important role in my problem). I do have blackheads and few pimples, but now I know that my "pimples" are actually caused by rosacea cuz these damn red bumps just wont go away! I now have scars from the old red bumps that make me look like I have chickenpox or something.

    I have been a vegetarian for many years but now with the recommended diet my dermatologist suggested, I am kind of becoming a vegan/gluten intolerant/lactose intolerant/alcohol intolerant person and it drives me crazy! I did try to write a little journal with all my symptoms vs the food I eat, but the interpretation is not obvious to make. I think I feel a little better with all these foods removed from my diet, but it's not like the situation is in control even though I am completely paranoid with the ingredients in every damn thing I eat! I've had better stages without the diet but I've had worse too.

    I went to 3 different dermatologist cuz they all make me feel like they are "going to try something", but every damn treatment has failed until now. The only thing I can relate on is my BB cream (Missha Perfect cover No.23, that I order on Ebay from any Korean seller). It is certainly not helping my rosacea (it makes my skin feel dry after 10 hours) but it's the only thing that allows me to go outside without having to hide my face with my hair or look down when someone talks to me from a certain distance.
    Otherwise I have been put on Tetralysal (3 months didnt make a single difference), contraceptive pill Diane35 (didnt help and gave me terrible headaches), all types of useless topical creams (Avene, Laroche Posay, Skin Actives etc...)

    And now :
    Flagyl : I have been on it for two weeks at 250mg X2/day, but I think it might worsen my rosacea
    And a swiss equivalent of Mirvaso : I stopped using it yesterday cuz I suspect it caused the incredible skin burns I was feeling couple of hours after putting it on.. 250$ in the trash can!

    I know that rosacea is a progressive disease and I might just be at that point where my rosacea is escalating, but since it fits with the new treatments, I'm starting to think I should stop taking Flagyl too!

    Is it only me or do dermatologist not really look at the problem close enough to prescribe something that might actually work?
    All 3 dermatologists I have seen simply look at my red and bumpy from face 3 feet away and wrote a prescription. And when I tell them it's not working, they want to try something else. If they looked at my type of skin and paid attention to my medical history maybe I wouldnt feel like if they were playing lottery !

    I did read many posts on this forum and most stickies, but I feel overwhelmed by all these information and personal success and failure story!

    I am confused and frustrated at the same time. I am wasting so much money and yet haven't find something that even slightly helps with my rosacea. And I feel like time is my enemy now

  2. #2
    Senior Member Brady Barrows's Avatar
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    flahflah,

    Have you tried this simple test? Reduce your carbohydrate intake to less than 30 grams a day for thirty days and only eat protein and fat? Vegans can do this but it requires more fortitude. What I have discovered is that vegetarians eat a lot of carbohydrate, particularly fructose and sucrose. Carbohydrate is a rosacea trigger not recognized by the NRS but is recognized by the RRDi.

    I think if you have the will power and stamina and try this little 30 day, no more than 30 grams of carbohydrate a day with absolutely no sugar you will discover your skin will improve. This won't cure it. But it does give you a way to control it. What you need is protein and fat to heal your skin. If you decide to try this let us know the results.
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  3. #3
    Moderator Melissa W's Avatar
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    Hi flahflah, I am so sorry about your frustrating experiences and as you probably realize most of us here can totally relate to what you are going through. It can be overwhelming because there is no clear one treatment that works for all and it comes down to trying one thing at a time and giving it some time to see if it helps you.

    I am mainly a vegan too and lately have also given up dairy because of my rosacea and I find it is helpful re paps. I also limit eating simple carbs and go for the complex ones that take longer to break down and affects blood sugar less dramatically. My source of protein is mainly beans-chic peas/lentils/black beans etc and adding quinoa is also tasty and doesn't cause a flare for me.

    Stop the mirvaso (equivalent) because it's not helping you (and I am not reading any positive reviews about it either) and as long as you continue the Flagyl make sure to take a good probiotic to replenish the good bacteria. Take it at a different time of day than the antibiotic though. I also eat cultured veggies to get good bacteria into my system. It's good to take probiotics in any case whether or not on antibiotics.

    Keep searching till you find a dermatologist you feel you can work with and will work with you as a team to help find you relief. They do exist but it can be a challenge to find a caring doctor at times. Is there a teaching hospital near you? They might have someone good there who will take the time to go through different treatments and really look at you and talk with you.

    And please, try taking it all one day at a time and when things feel overwhelming just take a deep breath and know you will find what works for you. It sounds cliché but it takes time and almost everyone here can attest to that fact. None of us came here and found what worked for us immediately. Patience, strength, good sense of humor and patience again. Hang in there!

  4. #4
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    I'm so sorry you are experiencing this run-around with your doctors and, in the meantime, you are suffering.

    I just responded to a thread about the use of Timolol eye drops used topically for treatment of rosacea:
    http://www.rosaceagroup.org/The_Rosa...Telangiectasia

    I have suffered from rosacea for many years and it ebbs and flows.

    I have had success with Finacea and Aczone. I tried Mirvaso (which was touted as a miracle drug to reduce redness) and, at first, had great results. After about a week, I began to experience horrific rebound flushing, so I stopped that. I personally would not recommend it to anyone suffering from rosacea.

    Now, I use Metrogel (once a day); Timolol drops, topically on my problem areas (1 drop on my problem areas daily); and am undergoing IPL (intense pulse light) laser treatments to diminish the redness. I do believe the the IPL I'm receiving now has been the most beneficial treatment.

    I wish you all the best, and please know you are not alone.

    Sending love and light your way!

  5. #5
    Senior Member dave75's Avatar
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    hello have you tried oracea yet? with oracea and proper diet, i can get my rosacea mostly under control...

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    Guys what would you do if you were in my situation :
    - Started both Flagyl (antibiotics) and Mirvaso (cream) 2 weeks ago
    - For one week everythin was fine, I even thought Mirvaso made my skin whiter
    - After a week I start to have these huge flushes that wont go away. I'm used to having flushes, but not THAT bad. This new kind of flush makes ma ears burn and my face looks like I just got a sunburn, I look swollen and red!
    - So I first suspect Mirvaso to be causing this so I stop using it
    - But 3 days after stopping Mirvaso it still happens!

    Is it possible that Flagyl is causing this? And that Mirvaso wasnt the product to blame? I know my dermatologist said I needed to keep using Flagyl atleast a month to see good results, but my face hurts now! I dont know if I should stop the treatment or give it some more time... Can mirvaso cream be responsible for these terrible flushes 3 DAYS after I stopped using it? Or should it have an immediate relief when not applied anymore?

    Now, in response to all your replies (oh and by the way thank you so much for answering my initial post! You guys are awesome!)

    I will look into carbs and test that diet... I already know that this is going to be complicated since i love rice so much!! But I'll try to plan 4 weeks of high protein meals, but geez hi fat.... I never eat fatty foods!
    I have a lot research to make before planning such a diet though, cuz I want variety!

    Unfortunately oracea, Finacea and metrogel are not very popular in Europe. I think i could ask my dermatologist for Metrogel (since the active ingredient is the same as the damn Flagyl pills I'm taking I guess it should be available), But the other 2 simply dont exist!

    I was also thinking of he following treatments as I read good comments about them : Spironolactone, something containing kinetin, and last treatment if all the others fail.. Accutane. Dont worry I am aware of the dangerous side effects of Accutane so when I say that its a last option, it really is!

    Gotta go, my face is burning like hell, I need water on my face right now!

  7. #7
    Senior Member Brady Barrows's Avatar
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    flahflah,

    I have added your report as #217 today with Mirvaso. It usually takes a week or so before your skin gets back to baseline, what it was before the Mirvaso, according the majority of reports.

    Doubt if the Flagyl is doing this.

    As to the no carbohydrate (less than 30 grams a day), this is simply an experiment to see if your skin improves in 30 days. I know it is difficult, but so is rosacea. What if you skin improves? Would it be worth the sacrifice to see or do you love rice (mostly carbohydrate) more than seeing if your skin improves. If it doesn't you can always go back to eating rice, as much as you want.

    If your skin improves, then you are armed with knowledge of what is triggering your rosacea. Carbohydrate is a rosacea trigger, just as valid a trigger as any other of the proposed triggers.

    If you don't see any improvement, then you have learned that.

    Many have reported in this forum that carbohydrate, particularly sugar, is a rosacea trigger. You may find out first hand if this is true for you. There is basically only one way to find out and that involves sacrificing carbohydrate. Many are simply not able to do this or simply will not even try because their love of carbohydrate is so great. Up to you if you are up to the task. You will discover how addicting sugar is. Sugar is an addicting substance.

    As for eating the fat, fat has been given a very bad rap. Fat is absolutely essential for human survival. So is protein. Carbohydrate is not essential for human survival (with the exception of fiber which may be essential).

    There are minimum daily requirements for fat and protein. Carbohydrate is not essential (with the exception of fiber which may be essential).
    Last edited by Brady Barrows; 19th June 2014 at 08:29 AM.
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    Thanks a lot for the quick answer!
    Ok i will give flagyl another 5-7 days before I stop the treatment.

    But after that period I'm done with this antibiotic!
    I read the notice in the package, it does say that one rare side effect of flagyl is :

    Hypersensitivity

    Metronidazole has rarely been associated with a serum sickness-like reaction which presented as arthralgias, malaise, fever, chills, pruritus, and rash.

    The French notice does even mention "redness of the skin"

    I really wish we had the same treatments available here in Switzerland!! Mainly oracea!

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    Is eliminating carbs even practical or healthy for an active person? Though perhaps not "essential", they are still very useful, affect energy levels and the ability to get on with your day/life. If you are male, u can't build muscle very well without carbs (and healthy amounts of muscle is good for girls too). Sure, if you have no interest in fitness or activity, perhaps a no carb diet *may* improve your rosacea. But I would argue that is very imbalanced approach to life and not good for your overall well being. Your life can't revolve around rosacea.

    Why not just stick to a practical/healthy diets that includes complex carbs and avoid the simple carbs. I have noticed that simple carbs (such as sugars) do affect my rosacea, while complex carbs do not. They have different inflammatory and insulin responses. Not all carbs are created equal. So to blame everything on "carbs" seems like too much of blanket statement. I really question the approach of a no carb/very low carb "extreme" diet for a well balanced and healthy individual. Your body is VERY important and your rosacea isn't going away by an extreme diet anyway. Keep sight of what is important in your life and try to treat rosacea appropriately.

  10. #10
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by wiry View Post
    Is eliminating carbs even practical or healthy for an active person? Though perhaps not "essential", they are still very useful, affect energy levels and the ability to get on with your day/life. If you are male, u can't build muscle very well without carbs (and healthy amounts of muscle is good for girls too). Sure, if you have no interest in fitness or activity, perhaps a no carb diet *may* improve your rosacea. But I would argue that is very imbalanced approach to life and not good for your overall well being. Your life can't revolve around rosacea.

    Why not just stick to a practical/healthy diets that includes complex carbs and avoid the simple carbs. I have noticed that simple carbs (such as sugars) do affect my rosacea, while complex carbs do not. They have different inflammatory and insulin responses. Not all carbs are created equal. So to blame everything on "carbs" seems like too much of blanket statement. I really question the approach of a no carb/very low carb "extreme" diet for a well balanced and healthy individual. Your body is VERY important and your rosacea isn't going away by an extreme diet anyway. Keep sight of what is important in your life and try to treat rosacea appropriately.
    wiry,

    This simple 30 day test is not a life long diet. It is only for thirty days. After the thirty days, one can create the most healthy diet they want to. I am only suggesting this for thirty days to prove that carbohydrate is indeed a rosacea trigger. When one reduces carbohydrate to less than 30 grams a day, the metabolism changes. This metabolic change is due to a reduction in insulin in the blood and an increase in glucagon. This helps control rosacea. The only way to do this is to simply try it.

    There is no way that carbohydrate builds muscle. Muscle is made by protein and fat. Carbohydrate is pure energy. It does not build muscle. You really should read the article I mentioned earlier.

    As to a healthy diet that is another subject. But if one finally is convinced that carbohydrate, particularly sugar, is indeed a rosacea trigger by this simple test, one can then modify their diet to a more healthy one eating the complex carbohydrates like broccoli, cauliflower, spinach, green beans, etc, and avoid the simple carbohydrates like rice, white flour, pasta, candy, sugar, fructose, and the list goes on this.

    Trigger avoidance is an accepted method in treating rosacea and the majority of triggers to avoid are diet triggers. Carbohydrate and sugar are rosacea triggers, just as valid as any other proposed trigger. If one is encouraged to avoid wine and hot spicy food for thirty days, there shouldn't be an issue with that, is there? Carbohydrate avoidance for 30 days poses no known health risks and at the very least no more risk than avoiding wine and hot spicy food for thirty days.

    Doctors parrot the NRS diet trigger list and commonly tell their patients not to drink wine and avoid spicy food. If after thirty days their rosacea gets better then they could try drinking wine and spicy food to see if their rosacea returns. Then they will know.

    This same approach is what I am suggesting. Avoid carbohydrate for thirty days and see if your rosacea improves. If it does you will know. Then eat all the ice cream, apple pie, cake, candy, soft drinks and any sugar delight you want and see if your rosacea returns. If it does you will know. This knowledge will then benefit one in using this in diet trigger avoidance.
    Last edited by Brady Barrows; 20th June 2014 at 03:33 AM.
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