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Thread: My nightmare with this horrible condition

  1. #1
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    Default My nightmare with this horrible condition

    I have posed this in the North America section seeking help in my area for a good derm. I'm posting my story here because I need top vent.

    I have seen three derms so far...each one worse than the last.

    I noticed one of my cheeks getting bumpy and very red in December 2011 when coming in from the cold.

    Saw Derm #1 a month later (January 2012). He diagnosed seb derm (he's right about that...partly) and prescribed Ketoderm 2% cream. As far as the rosacea portion he told me I just have a red face and to come back for laser treatments if I'm not happy after 6 weeks of Ketoderm cream. It was now March 2012 and decided against getting laser as the waiver they ask you to sign is kind of scary and the bumps had somewhat subsided, the redness was still there.

    March 2012 - August 2012: Everything was fine. Things going well, redness was kind of faint, no bumps.

    September 2012 - And the nightmare begins. Redness starts to creep in on the one cheek and both sides of my forehead, getting bumpy. Went to my GP and she asked if I'd like a second opinion (Ketoderm was not helping). I said yes please.

    Late October 2012: Derm #2 diagnoses seb derm + rosacea. Prescribes Protopic once a day in the evening and La Roche Rosaliac UV/Anti-redness mositurizer during the day. Proptic is a harsh medication that the skin does not easily absorb. Once applied it stays there for hours looking like it had just been applied when in reality it has been on your face for a long period of time, it also makes you want to itch your face like crazy. Regardless, I took the medication. The La Roche moisturizer helps with masking redness but I found that I would feel really hot for the first 15 minutes after applying and it sometimes doesn't feel good on my face.

    Used Protopic for a month and went back to see Derm #2. I was still getting the pimples associated with rosacea in new areas of my face where I was not using Protopic and in places where I was using the cream. Asked the derm if there was anything else I could do to improve upon this. What can I do to PREVENT the pimples from popping up because they leave permanent redness behind. Is there a pill I could take? Derm said "no pill, keep taking the cream" or get laser treatment.

    I went back to my GP and explained to her that I feel like time is a major factor. I see these pimples showing up in new places and leaving permanent redness behind. I need to do something to stop it. It's taking over my face. Can you send me to see someone else?

    So off to Derm #3 I went. Saw her one week before Christmas 2012 (just last week). She prescribed ted-doxycline (antibiotics) and HC in Noritate CR. She mentioned that it was two creams mixed together, one of which was hydro-cortizone (steroid) to knock down the bumps/pimples. I had read about how some people will not take this because it's a steroid and as I left her office I was contemplating whether I should take it...or not. I ended up taking it because I'm desperate to help my face.


    THIS WAS A HUGE MISTAKE! In less than 24 hours both sides of my face and forehead had exploded with bumps and pimples. The cheek that had first flared up last year was now swollen. My face has never looked worse, ever. I used this garbage for 4 nights until I was finally able to get back in to see her on December 24 after begging the receptionist for an appt.

    Derm takes one look at my face and says "this wasn't unexpected" and that "she's not surprised". Told me to get back to using Protopic and the garbage steroid cream concoction. it'll get worse before it gets better she said. I was completely floored and shocked that after seeing my face blow up like a meatball that she would tell me to keep taking this garbage. What I expected to hear her say was that not every med is right for everybody and to stop using it. But no, she went the other route and told me to keep taking it as well as going back to Protopic and moisturizer. So now she wanted me to take 2 cream meds + moisturizer.

    Needless to say I have stopped the steroid cream and gone back on the pro topic for now. In two days it seems to have gotten better but there's still swelling and tons of pimples and redness.

    I immediately called my GP's office and got an appt. for this Friday to seek yet another referral to see Derm #4.

    My condition is now bordering on extreme. I feel like my picture could go on wikipedia under the "rosacea untreated" photos. Only differences is that mine has been treated...to my detriment.

  2. #2
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    Quote Originally Posted by Lobo View Post

    My condition is now bordering on extreme. I feel like my picture could go on wikipedia under the "rosacea untreated" photos. Only differences is that mine has been treated...to my detriment.
    I'm a new member (long time lurker) and cannot post links yet but saw your description of a nightmare which is what I am calling my extreme condition also.

    I just posted my long story/introduction - Nightmare Herxheimer reaction of demodex, candida and bacteria - for new members introduction area.

    Not saying it's the same thing but it sounds like you are having a type of Herxheimer reaction to treatments also.

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    If you have subtype 2 rosacea (the kind with the bumps), I would probably focus on conventional treatments for rosacea first. It sounds like the dermatologists have given you some nonstandard rosacea treatments or treatments for other conditions. From what I can gather, Ketoderm is for seb derm and Protopic is for eczema. Low-dose doxycycline is a conventional treatment for the bumps associated with subtype 2 rosacea, so I would probably stay on that unless you have a compelling reason not to. However, topical antibiotics (mainly metronidazole) are usually the first-line treatment from what I've heard.

  4. #4
    Senior Member Starlite's Avatar
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    Quote Originally Posted by Lobo View Post
    <snip>
    Derm takes one look at my face and says "this wasn't unexpected" and that "she's not surprised". Told me to get back to using Protopic and the garbage steroid cream concoction. it'll get worse before it gets better she said. I was completely floored and shocked that after seeing my face blow up like a meatball that she would tell me to keep taking this garbage. What I expected to hear her say was that not every med is right for everybody and to stop using it. But no, she went the other route and told me to keep taking it as well as going back to Protopic and moisturizer. So now she wanted me to take 2 cream meds + moisturizer.

    <snip>
    Oh Lawdy! Nice of her to mention this might happen ahead of time. You must feel terribly hurt, angry, and confused.

    Good for you for trusting your body and stopping the cream. So now slow waaaaay down. Take a deep breath and know you will solve this for yourself.. in time. First lesson, the medical system may not have all the answers! Shocking I know.. been there. Next lesson, you are now on a journey of learning many new things, the lest of which is handing your body over to anyone else with out doing some study and research could be harmful. You (we) are now taking back control of our wellness.

    That being the case, you have come to the right place. Start reading.. give yourself lots of time. If you don't understand a word, go google it and look it up. Take notes. Ask lots of questions. In time the still quite place inside of you that does not make decisions out of fear will begin to understand what you need to do. You will become your own scientist! Begin experiments and "patch tests".. etc.. You are going to be ok.

    It is my belief, (my path, my journey) that our skin is the early warning system that the body is struggling with something and beginning to be overwhelmed. It a lucky thing to have an early warning system. Yes, there may be a genetic component, but only in that our genes allow for an early warning system on our faces. LOL

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    Quote Originally Posted by jrlhamcat2 View Post
    If you have subtype 2 rosacea (the kind with the bumps), I would probably focus on conventional treatments for rosacea first. It sounds like the dermatologists have given you some nonstandard rosacea treatments or treatments for other conditions. From what I can gather, Ketoderm is for seb derm and Protopic is for eczema. Low-dose doxycycline is a conventional treatment for the bumps associated with subtype 2 rosacea, so I would probably stay on that unless you have a compelling reason not to. However, topical antibiotics (mainly metronidazole) are usually the first-line treatment from what I've heard.
    When I left her office I decided to stay on the antibiotics (doxycycline) because I've read that this is a common treatment for Rosacea and I figured it wouldn't hurt to take it. My face was also swollen so so I'm hoping it'll help with that. Began using Protopic again and stopped taking the HC in Noritate CR. While I was in her office the 1st time) I asked about Metrogel. She told me the Noritate was just another brand of cream that did the same thing as Metrogel.

    Needless to say I won't be going back to her and it's mostly due to her dismissing the fact that my face suffered a horrible reaction from this medication at which point she told me to keep taking it. My face started to blow up less than 24 hours after I started to take it. It was either the hydro-cortisone component of the team or the Noritate (the pharmacy mixed this cream). Not sure which one it was but I'm never putting that on my face ever again.

  6. #6
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    Quote Originally Posted by Starlite View Post
    Good for you for trusting your body and stopping the cream. So now slow waaaaay down. Take a deep breath and know you will solve this for yourself.. in time. First lesson, the medical system may not have all the answers! Shocking I know.. been there. Next lesson, you are now on a journey of learning many new things, the lest of which is handing your body over to anyone else with out doing some study and research could be harmful. You (we) are now taking back control of our wellness.

    That being the case, you have come to the right place. Start reading.. give yourself lots of time. If you don't understand a word, go google it and look it up. Take notes. Ask lots of questions. In time the still quite place inside of you that does not make decisions out of fear will begin to understand what you need to do. You will become your own scientist! Begin experiments and "patch tests".. etc.. You are going to be ok.

    It is my belief, (my path, my journey) that our skin is the early warning system that the body is struggling with something and beginning to be overwhelmed. It a lucky thing to have an early warning system. Yes, there may be a genetic component, but only in that our genes allow for an early warning system on our faces. LOL
    I have been reading off and on for a year. I've lurked here and at other sites trying to understand what is happening to me and why. The information is overwhelming. One person says this is good for you...the other says it's bad. One says don't take anti-biotics..the other says take them. Try probiotics...don't try them. Eat lots of grains...stay away from grains...ugh...I wish there was one good way to go about things. There doesn't seem to be and it can all be very confusing.

    All these doctors that I have seen seem to want to treat this condition from the outside in...instead of the inside out. If something is showing up on your face you would think it had to have started somewhere inside of you. That seems like a common sense deduction. But these doctors don't always think that way. Derms seem to have a one track mind of always treating the skin itself instead of the source of the problem which is most likely...somewhere inside.

    On Friday I see my GP who is very good, kind and open to suggestions. I'm going to ask to see Derm #4, also ask about seeing someone that might be able to test me for a digestion related connection.

    I don't know what else to do anymore. I've left home once in six days...to see the Derm. I don't look people in the eye when I have a conversation anymore, I stare at the ground when walking around instead of straight ahead. I never used to miss work, hardly ever unless I had the flu. Calling in sick now because I don't want people to stare, ask questions about my face or be scared to sit next to me. I work most of the day outside, cold weather is brutal on my face.

    I'm a grown man. The last time I cried was over 30 years ago when I was 8 and my grandfather died. I'm not ashamed to admit that I've done quite a bit of that over the last 3 months. When it's bad, socially and psychologically...it's devastating.

    This is without a doubt the most demeaning thing I've ever had to deal with in my life.

  7. #7
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    Quote Originally Posted by Lobo View Post
    When I left her office I decided to stay on the antibiotics (doxycycline) because I've read that this is a common treatment for Rosacea and I figured it wouldn't hurt to take it. My face was also swollen so so I'm hoping it'll help with that. Began using Protopic again and stopped taking the HC in Noritate CR. While I was in her office the 1st time) I asked about Metrogel. She told me the Noritate was just another brand of cream that did the same thing as Metrogel.

    Needless to say I won't be going back to her and it's mostly due to her dismissing the fact that my face suffered a horrible reaction from this medication at which point she told me to keep taking it. My face started to blow up less than 24 hours after I started to take it. It was either the hydro-cortisone component of the team or the Noritate (the pharmacy mixed this cream). Not sure which one it was but I'm never putting that on my face ever again.
    That's just bizarre that she said that steroids do the same thing as Metrogel, then told you to keep applying steroids after you had a well-documented type of reaction to them. You've probably seen the warnings on the forum against ever applying steroids to your face -- my dermatologist has given me the same advice. I'm glad you're not going back to her. It can get better and you might be surprised by how much the redness can fade once you get this under control.

  8. #8
    Senior Member nat007's Avatar
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    Big hugs to you!! It is so sad that you have to go through this hardship now, and it is very overwhelming but I do hope that you will find the right treatment. Like most people have found in the end. The subtype 2 is typically easier to treat than ongoing flushing, so although it must be terrible to feel like you've got the plague right now, try to stay positive and start trying treatment options in the right, most logical order. Like someone already mentioned to you. I would try to get a good idea of the standard treatment options of your subtype and take this information to derm #4, just in case he/she is useless as well. Try perhaps low dose doxy (Oracea it's called I believe), maybe ,etronidazol cream on your outbreaks, but keep in mind that a lot of topicals are harsh on the skin. Protopic is an immunosuppresor and used merely for eczema. Not many rosaceans can handle it well and it has vsodilatation, widening if the blood vessels, as a possible side effect. I tried both protopic and elidel (the lighter sister) and they made me way more red. I read more people have this problem. Steroid cream (hydro cortisone) is usually NOT a good option for rosacea and when you react this severely to it and the *%&^derm still wants you to continue without looking into ways to calm matters down, well grrrrrrrrrrrrrrrrrrrrrrrrrr, that is making me angry. Maybe oral diclofenac can help you, it's a non steroid anti inflammatory medication. Laser is usually helpful for redness and flushing but Dr Chu from Hammersmith Hospital works with a special laser, the N-light I think it is. This documentary is a bit depressing and deals about young people with acne and depression/accutane, but somewhere half ways Dr Chu is interviewed and shows his laser treatment for the acne, perhaps it is something that you can benefit as well with a local derm who uses this technique?

    http://www.youtube.com/watch?v=PgpYS33kMVc

    Diet wise you can never go wrong with trying how you do over a 2 month course of eliminating foods that are high in sugar. Dairy and gluten may be a problem, or they may not. Try to avoid E numbers and cook fresh foods, with plenty of greens and fruits and vegetables, maybe organic meat for a while and see if all of this affects your skin. For a lot of people it does.

    all the best

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    Quote Originally Posted by Lobo View Post
    I have been reading off and on for a year. I've lurked here and at other sites trying to understand what is happening to me and why. The information is overwhelming. One person says this is good for you...the other says it's bad. One says don't take anti-biotics..the other says take them. Try probiotics...don't try them. Eat lots of grains...stay away from grains...ugh...I wish there was one good way to go about things. There doesn't seem to be and it can all be very confusing.

    All these doctors that I have seen seem to want to treat this condition from the outside in...instead of the inside out. If something is showing up on your face you would think it had to have started somewhere inside of you. That seems like a common sense deduction. But these doctors don't always think that way. Derms seem to have a one track mind of always treating the skin itself instead of the source of the problem which is most likely...somewhere inside.

    On Friday I see my GP who is very good, kind and open to suggestions. I'm going to ask to see Derm #4, also ask about seeing someone that might be able to test me for a digestion related connection.

    I don't know what else to do anymore. I've left home once in six days...to see the Derm. I don't look people in the eye when I have a conversation anymore, I stare at the ground when walking around instead of straight ahead. I never used to miss work, hardly ever unless I had the flu. Calling in sick now because I don't want people to stare, ask questions about my face or be scared to sit next to me. I work most of the day outside, cold weather is brutal on my face.

    I'm a grown man. The last time I cried was over 30 years ago when I was 8 and my grandfather died. I'm not ashamed to admit that I've done quite a bit of that over the last 3 months. When it's bad, socially and psychologically...it's devastating.

    This is without a doubt the most demeaning thing I've ever had to deal with in my life.
    I would test down the pan!

    Next time you go backwards check to see if there is anything that looks like small globules of floating fat in the water!!!
    cure

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    Quote Originally Posted by jrlhamcat2 View Post
    That's just bizarre that she said that steroids do the same thing as Metrogel, then told you to keep applying steroids after you had a well-documented type of reaction to them. You've probably seen the warnings on the forum against ever applying steroids to your face -- my dermatologist has given me the same advice. I'm glad you're not going back to her. It can get better and you might be surprised by how much the redness can fade once you get this under control.
    She told me that Noritate did the same thing as Metrogel but that she had the pharmacy mix in 1% hydro-cortisone into it as well.

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