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  • Greetings and my situation...

    First off I'd like to say hi, I'm glad I've come across this board as I need to speak to other people about my situation.

    I'm a 20 year old male. I took accutane when I was 17/18 and stopped taking it about 2 years ago. It did a pretty damn good job on my acne, which was of the severest kind. Whilst I was taking it, I was very red/dry and prone to flushing, but these are known side-effects of accutane which I presumed would subside once I stopped taking it. Sadly I was wrong. Ever since I took it I have suffered from all the classis pre-rosacea symptoms. I get a classic rosacea flush centred around my cheeks, nose and forehead. Typically it is triggered by spicy food, hot drinks, alcohol (which I now abstain from 100%), nerves, stress or exercise. Unfortunately, the exercise doesn’t even have to be intense. It might sound daft, but literally running up a couple of sets of stairs will bring my colour up, it’s that bad. When I get these flushes, I can literally feel the blood vessels in my cheeks pouding away, it’s very unpleasant and makes me so self conscious. My skin is also ridiculously sensitive to pretty much anything contact-wise- cleansers/moisturisers etc. Even things which are supposedly for 'sensitive skin' are no good.

    So, when the rosacea style symptoms continued post-accutane, I visited my GP. In short, he wasn’t interested. Told me that the accutane was out of my system, it can’t have long term side effects, I didn’t have rosacea (“19 year old males don’t get rosacea”) and to basically get lost. Though I am not medically trained, I know these comments to be highly ignorant after extensive research on the internet and such like. This really knocked the stuffing out of me and made me feel helpless. As a result I plodded on for a long time suffering, not having the bottle to go to another doctor and ask them to diagnose my problem in case they told me to get lost too.

    Recently, I plucked up the courage to go to see another doctor at my university health service. He wasn’t too sure what was going on, but after scraping his finger down my chest and it revealing a big red mark (which stayed for ages) he decided he thought it was urticaria, and gave me antihistamines. Though he didn’t say anything about rosacea, can antihistamines help with rosacea in any case? In short, they are not helping much. It does appear that I do have urticaria because he tested me out and decided my histamine level was too high. However, nothing has changed with the rosacea-style flushes. I still get them, just as bad, and they stay just as long (often 2 or 3 hours). At some point I will photocopy my passport photo and post it here, as I had a classic flush at the time. I’m sick of people saying ‘are you hot?’ ‘have you been running?’ ‘Ooh, haven’t you got rosy cheeks’ etc etc. It sounds odd, but I want a doctor to confirm that I have rosacea. I just know I have it. I know my body, I know what triggers it, I know how it feels to have blood surging through my cheeks, I know how long the flushes last……

    Has anyone else been misdiagnosed or had trouble actually having it confirmed that they have rosacea? Until someone will acknowledge it, I can’t treat it, and I feel like I’m wasting time, letting it develop and not doing anything to halt it’s progress.

    I’m going to go back to the GP who gave me antihistamines and tell him that my flushes have not gone away. I might ask about rosacea, but then again I always feel bad trying to prompt a doctor, as I think some of them take it as a slur on their ability. Unfortunately, as my experience with the first doctor mentioned above proves, general practitioners do not always provide quality information

    This problem is becoming more and more important for me. I’m a Law student, and during the next couple of years I’m going to be facing some tough things- rigorous job interviews, presentations to groups of fellow students and legal professionals, and perhaps ultimately standing up in court. However, stupid/petty as it may sound, these experiences rather than filling me with excitement are filling me with dread- I can’t face doing all of these things looking like a shining beacon.

    If anyone could give me any advice, or any thoughts at all as a result of anything I’ve said, I’d be extremely interested. Thank you for your time, I appreciate greatly.

    Incidentally, the antihistamine I take is cetirizine (sp?) and I have been taking it for roughly a month with no noticeable benefit. Thanks.
    Double negatives are a big no-no.

  • #2
    welcome jonesy

    Jonesy,
    Welcome to the rosacea forum. Doesn't sound like you are a newbie to me and you seem to have picked quite a lot of information already. I realize your frustration at not getting a physician to diagnose you with rosacea and going to another one doesn't sound like such a hot idea at this point. You say you are going back to your GP and hopefully he will try something else since the antihistimine hasn't helped. Have you read the sticky at the beginning of this forum, Newbies ? That is a great place to begin learning about rosacea. The problem is that getting an accurate diagnosis of what skin condition you have is so important. Do you have pustules or pimples or just flushing?

    Comment


    • #3
      Hello Jonsey,

      Let me give that a look tomorrow with fresh eyes and brain cells. Think of anything else you might want to add. More info. is always better.

      Hang in there.

      Comment


      • #4
        Re: Greetings and my situation...

        Originally posted by Jonesy
        First off I'd like to say hi, I'm glad I've come across this board as I need to speak to other people about my situation.

        Has anyone else been misdiagnosed or had trouble actually having it confirmed that they have rosacea?
        many of us. the younger you are the more likely it is that derms think it can't be rosacea.

        Comment


        • #5
          Hi guys, thanks for responding. Dr Nase, I'd heard about your research on rosacea and was very surprised/pleased to find that you frequent this board!

          Brady- I'm someone who, for better or for worse (I say this because the research process can often throw up pieces of information that you don't want to hear), does a lot of research into things which are/might be affecting me. During my acne-suffering years I learnt enough about the condition and its treatment to write my own book about it!

          As regards your question, the state of my skin is one of permanent redness (which varies in intensity but is, as its 'quietest', still very noticeable), with the bouts of flushing on top of that. I occasionally get dry-ish spots on the top of my cheeks where I get the flushing, though I don't know whether these are acne related - I occasionally get the odd spot here and there. Having read about the subtypes on here, I guess I would consider myself a subtype one- permanent redness, bouts of flushing and a strong burning sensation on my cheeks during the flushes.

          Another very general trigger I omitted to mention is temperature. If I walk into a hot room, bang, my colour shoots up badly. I also react to cold and strong winds. Anxiety is also a big one for me- I mentioned in my first post that I am already worrying about situations which are years down the line. It might seem ridiculous, but this is how I am with it.

          In terms of hygiene, I am at a loss really. I don't like not cleansing my face because then I feel unhygienic and dirty. But despite a huge amount of trial and error, I am yet to find products that I can use on a daily basis, certainly here in the UK, which won't aggravate my skin.

          Lastly, I might not be so concerned/depressed about this were it not for the fact that, due to my acne battle, I have been suffering with skin problems throughout 'the best years of my life' (since I was about 15) and I have become very withdrawn socially, and depressed inwardly. My acne was horrific, such that I can't even provide a picture- I refused point blank to have any taken. I even destroyed my school leaver photo and wouldn't even show my own mother, I was that ashamed.

          Alongside the rosacea style symptoms of redness, flushing and burning, I am also constantly fighintg against dry, tight skin since taking accutane.

          I also work out and do weights, this sets me off too.

          Bowing my head, for example to clean my teeth or wash my hair in the sink, I get immediately red too. Hope this doesn't sound too silly.

          Thanks guys.
          Double negatives are a big no-no.

          Comment


          • #6
            what you describe, skin status, your triggers - that really sounds like rosacea.

            antihistamines can be benefitial for some, but it won't do much for most of us. it just helps with certain triggers.

            there are a lot of things to give a try. one of the basics would be starting topical metronidazol. if you can use it (without irritation) maybe it can improve your skin a bit.

            next steps oral antibiotics, i guess you already know some from your fight against acne

            see here:

            http://forum.rosaceagroup.org/viewtopic.php?t=436

            and finally lasers. there are experienced docs in uk...

            Comment


            • #7
              Re: Greetings and my situation...

              Originally posted by Jonesy
              I'm a 20 year old male. .... and gave me antihistamines. Though he didn’t say anything about rosacea, can antihistamines help with rosacea in any case? In short, they are not helping much. .....Incidentally, the antihistamine I take is cetirizine (sp?) and I have been taking it for roughly a month with no noticeable benefit. Thanks.
              It is possible to get rosacea at any severity at any age. I have documented some of it in [[Rosacea and the age myth]] but basicially statistics are being mis-interperated and lots of dermatologists are getting the idea that rosacea is only for old people.

              [[Clonidine]] should help partialy with the flushing but you may have to do more to control it. [[Intense Pulsed Light]] or [[Laser]] may be your best bet at controlling this. There have been reports of antihistamines helping and you may want to try it for another month before deciding whether or not to stop taking it.

              Comment


              • #8
                Sounds like rosacea to me. I actually had the opposite problem with my university doctor...I went in for dry skin where my nose and cheeks meet. He said it was probably rosacea. Turns out it was seb derm.

                Than about 1 year later, I went to my dermatologist for a check-up. Mentioned that I was starting to get red after a hot shower or intense sports. Then I was diagnosed with rosacea. I guess my first doctor must have been able to see the future.

                Yeah, you will probably find out that a lot of doctors don't know much about rosacea or how to treat it. As for me, I have basically stopped weight training and exersice and pretty much all triggers, and I'm starting IPL treatments in two weeks.

                Comment


                • #9
                  Hello Jonesy,

                  Your cyberspace description is classic rosacea. You dexription of acne and accutane suggests that you were on the high dose end which is not good flor anyone with a predisposition for rosacea (but cystic acne vs rosacea is not an easy choice). A uticarial response following high dose accutane is actuallyquite normal. Antihistmines are more effective against cettain triggers than rosacea in general.

                  First, you need better understanding from your doctor. As Warren clearly showed the Age Myth is real and harmful:


                  FACIAL FLUSHING IS THE FIRST AND
                  UNIVERSAL SYMPTOM OF ROSACEA

                  Medical experts indicate that frequent facial flushing is the first symptom of rosacea:

                  • Dr. Wollina states, “Recurrent flushing is the earliest component of rosacea to be apparent.” (1)

                  • Dr. Marks indicates that frequent or persistent flushing is the earliest tell-tale sign of rosacea. (2)

                  • Numerous other rosacea studies and reviews suggest that facial flushing is the first symptom of rosacea. (3-10)

                  Important


                  Rosacea experts urge general physicians to be on the lookout for pre-rosacea flushing because it is an early warning sign of rosacea. Experts point out that pre-rosacea flushing can often be detected in children, teenagers, and young adults:

                  • After in-depth interviews with numerous rosacea sufferers, Drs. Klaber and Wittkower found that most of their patients had flushed since childhood. (11)

                  • Dr. Nagasaka and colleagues indicate that many of their rosacea patients experienced facial flushing and blushing during their childhood years. (12)

                  • Dr. Panconesi reported that many of his rosacea patients experienced facial flushing during their childhood and teenage years. (13)

                  • Consistent with the above reports, Drs. Drolet and Paller documented severe facial flushing and blushing in very young children. (14)

                  • Dr. Wiemer states, “The early flush in adolescence and young adulthood is a definite marker for the development of rosacea.” (15)

                  • Rosacea experts warn, “The healthy-looking glow that appears in many rosacea sufferers in their teens and early 20’s can actually be an early sign of rosacea.” (16)

                  • In the medical textbook, “Acne and Rosacea”, physicians state, “The early signs of rosacea are recurrent episodes of flushing which finally become persistent erythema, particularly on the nose and cheeks, often before the age of 20.” (17)

                  • Other medical experts state that the flushing response is, “Often present since childhood and is therefore only inconsistently recognized as an abnormal event by patients.” (18)

                  • Medical specialists indicate that mild schoolgirl blushing is a classic sign of pre-rosacea flushing. (13)

                  • Dr. Donshik and colleagues warn that the exaggerated flush response is the first clinical sign of rosacea, and that it can be present much earlier in life than general physicians think, “Appearing in the late teens and early 20s.” (19)

                  So, now that this is straightened out...... treatment. Difficult, but not impossible. High dose accutane for cystic acne can cause permanet thinning of the dermis (up to 40%).

                  Lasers are the best method of choice, but you will have to find an expert because in cases like yours, you actuallly dont want to go after the blood vessels first.

                  1. You must thicken the dermis via skin rejuvenation lasers or IPLs. 1064 YAGS are good for this, N-light is good for this, but it takes a ton of treatment to thicken the dermis even by 20%. You want cold hard facts though -- your dermal tissue will never thicken by itself in all likelihood.

                  2. After you thicken the skin and remodel the dermal architecture, then you can go after the blood vessels with Photoderm and YAG or other vascular lasers. Pre-flushing is of primary importance.

                  You will need some time toi digest this. You will need to do research on your doctors to find the right one.

                  Comment


                  • #10
                    Thanks for your responses, I appreciate it. Having looked around the forums I am a little bit scared about lasers. What I really want right now, is to get to see a dermatologist. That involves getting a GP to recognise that I have a problem which might require specialist attention, and obviously up to this point I have been unsuccessful in getting that far. I feel rude suggesting to a GP that they let me see a dermatologust because you never like to tell someone how to do their job, but what I really feel I need is for someone to look at me and say to my face 'you have rosacea'.

                    I was indded on high dose accutane. I started of relatively low (35mg for the first month) and then 70mg per day for a further 3 months.

                    I am interested in your comment about urticarial response being quite normal.The doctor who said I had urticaria and gave me the antihistamines was aware of all my triggers. I exlained all of them to him, and he witnessed one of my flushes in person- I flushed badly when I went into the surgery, because I get anxiety flushes. I am intrigued therefore as to why he might've come to the conclusion that it was urticaria rather than rosacea. Of what I have described, what distinguishes my condition from urticaria, or what suggests that it is rosacea rather than urticaria?

                    The GP also told me that he had had a patient come to him recently who had undergone ETS and it had not worked at all and had in fact given rise to complications. He suggested therefore that I steer clear of it. But is ETS an appropriate treatment for urticaria? I thought ETS would be more rosacea related? If that's the case then it seems he has told me I have urticaria but spoken about the possibility of a treatment which is more aimed at a different condition.

                    As regards the treatment you suggest, are you saying that I shouldn't attempt step 2 unless I have successfully thickened the dermis? I have heard about YAG and read a bit about it, but you're saying I shouldn't attempt any laser treatment aimed at the blood vessels under any circumstances unless I have some treatment to thicken the dermis?

                    I fear monetary considerations, as a student, will stand in my way with this type of treatment, for the meantime at least.

                    From the stories I hear, it seems to be common practice to prescribe this metrogel stuff, but I don't fancy a topical bearing in mind my face reacts to contact with pretty much anything going!!

                    Thanks again for your input guys.
                    Double negatives are a big no-no.

                    Comment


                    • #11
                      Originally posted by Jonesy
                      Thanks for your responses, I appreciate it. Having looked around the forums I am a little bit scared about lasers. What I really want right now, is to get to see a dermatologist. That involves getting a GP to recognise that I have a problem which might require specialist attention, and obviously up to this point I have been unsuccessful in getting that far. I feel rude suggesting to a GP that they let me see a dermatologust because you never like to tell someone how to do their job, but what I really feel I need is for someone to look at me and say to my face 'you have rosacea'.

                      I was indded on high dose accutane. I started of relatively low (35mg for the first month) and then 70mg per day for a further 3 months.

                      I am interested in your comment about urticarial response being quite normal.The doctor who said I had urticaria and gave me the antihistamines was aware of all my triggers. I exlained all of them to him, and he witnessed one of my flushes in person- I flushed badly when I went into the surgery, because I get anxiety flushes. I am intrigued therefore as to why he might've come to the conclusion that it was urticaria rather than rosacea. Of what I have described, what distinguishes my condition from urticaria, or what suggests that it is rosacea rather than urticaria?

                      The GP also told me that he had had a patient come to him recently who had undergone ETS and it had not worked at all and had in fact given rise to complications. He suggested therefore that I steer clear of it. But is ETS an appropriate treatment for urticaria? I thought ETS would be more rosacea related? If that's the case then it seems he has told me I have urticaria but spoken about the possibility of a treatment which is more aimed at a different condition.

                      As regards the treatment you suggest, are you saying that I shouldn't attempt step 2 unless I have successfully thickened the dermis? I have heard about YAG and read a bit about it, but you're saying I shouldn't attempt any laser treatment aimed at the blood vessels under any circumstances unless I have some treatment to thicken the dermis?

                      I fear monetary considerations, as a student, will stand in my way with this type of treatment, for the meantime at least.

                      From the stories I hear, it seems to be common practice to prescribe this metrogel stuff, but I don't fancy a topical bearing in mind my face reacts to contact with pretty much anything going!!

                      Thanks again for your input guys.

                      1. Our flushes and anxiety flushes or blushig has nothing to do with histamine, but he does not know that. He saw a uticarial response from increased mast cells and thought that was the answer. It is not. Antihistamines are worth a try, but they are more for specific triggers and trying to recover from a bad flush that is accompanied by swelling.

                      2. Steer clear of ETS.

                      3. No vascular treatments until skin thickening.

                      4. I was in your shoes too. I received $20 each week during schooling for spending money. I went deep into debt to attack my rosacea rather than lose my life. You also have other choices of discounts, free sessions is photos can be included and long term repayment plans for situations with a testimonial. These are the angles and they work most times.

                      Comment


                      • #12
                        Do you need to thicken the dermis before you go for the vascular-problem in all cases were the rosacea is caused by accutane? Or will this be different for each patient?


                        Morten

                        Comment


                        • #13
                          Rebuild skin

                          Sorry to barge in like this in your thread Jonsey, but I just have to ask..

                          Dr. Nase, what is THE very best way to rebuild and thicken your skin? I know we're all different, but is there some "main guidelines" when trying to do this?

                          I was given 20 mg Accutane twice a day for about 6 months and I belive it was too high for my problem, which back then only was oily skin and very mild acne. It was after a few months with Accutane my real rosacea problems occured, with getting red from anything from getting into a warm car to being stressed and embarassed. My skin is ultrasensitive, but can look pretty good during a workday, but when it's over and I go home and start to unwind and relax, a flush comes on like clockwork, every night after a more or less stressfull day. It's like my body is on a spin when I'm at work, and then when I sit down and relax my rosacea comes on for an hour or two, which is really irritating becuase it's impossible to do anything after work! Go out and have a bite to eat? Forget it!

                          I really want to begin the process of rebulding my skin ASAP, I'm not getting any younger and can't afford loosing out on any more of what life has to offer!

                          You say one needs to have several NLite treatmenst to accomplish something. How about CoolTouch - what's your opinion? And I talked to a doctor, who actully had read your book, and she mentioned something called Restylane Vital (sp?) for skin rejuvenation. Any good?

                          Comment


                          • #14
                            Thanks DR Nase, you said "Antihistamines are worth a try, but they are more for specific triggers ". What sort of triggers are these?

                            I am going to go back to the doctor- he was a nice guy and to be fair was very understanding. If he doesn't bring up the topic of rosacea this time, then I will mention it. If I tell him antihistamines are doing me no good, then surely he ought to consider rosacea in any case. Despite having only been on here a handful of days however, I have realised that naivety and lack of schooling in rosacea is rife amongst practitioners.

                            Right now, I 'only' suffer form permanent redness and flushing. I guess in that sense (and considering that I'm only 20) I am lucky in that if I can curb it early hopefully I will be able to control it. That is what is keeping me positive right now, but I need a diagnosis. I hope to have something positive to post about sometime soon! Thanks!
                            Double negatives are a big no-no.

                            Comment


                            • #15
                              Re: Rebuild skin

                              Originally posted by andmag79
                              Sorry to barge in like this in your thread Jonsey, but I just have to ask..

                              Dr. Nase, what is THE very best way to rebuild and thicken your skin? I know we're all different, but is there some "main guidelines" when trying to do this?

                              I was given 20 mg Accutane twice a day for about 6 months and I belive it was too high for my problem, which back then only was oily skin and very mild acne. It was after a few months with Accutane my real rosacea problems occured, with getting red from anything from getting into a warm car to being stressed and embarassed. My skin is ultrasensitive, but can look pretty good during a workday, but when it's over and I go home and start to unwind and relax, a flush comes on like clockwork, every night after a more or less stressfull day. It's like my body is on a spin when I'm at work, and then when I sit down and relax my rosacea comes on for an hour or two, which is really irritating becuase it's impossible to do anything after work! Go out and have a bite to eat? Forget it!

                              I really want to begin the process of rebulding my skin ASAP, I'm not getting any younger and can't afford loosing out on any more of what life has to offer!

                              You say one needs to have several NLite treatmenst to accomplish something. How about CoolTouch - what's your opinion? And I talked to a doctor, who actully had read your book, and she mentioned something called Restylane Vital (sp?) for skin rejuvenation. Any good?
                              It's cool Andy, no problem! I can associate all too well with things like getting into a warm car and flushing.

                              However, I am opposite to you in that my skin will tend to play up during the working day when I'm at uni in lectures, doing presentations, tutorials etc and will tend to be calmer in the evenings when I am relaxing at home. This is probably because anxiety/nerves/social situations are my worst trigger and I am invairably anxious and nervous when interacting with other people close up because I'm worried that they're looking at my skin, which of course leads to a vicious cycle, making it even worse..... When I'm alone at home, I don't have to worry so much what I look like. A lot of this is in the head.
                              Double negatives are a big no-no.

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