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Thread: My journey to (steroid) rosacea. Gemini Tx. Pictorial.

  1. #1
    Senior Member Twickle Purple's Avatar
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    Default My journey to (steroid) rosacea. Gemini Tx. Pictorial.

    2-1/2 years ago. Age 40.


    __________________________________________________ ___

    I’d used steroids since I was 2.
    I kept my atopic dermatitis under control with twice weekly,
    full body application of high potency (betnovate) ointment.
    After which I would be pink for a couple of hours.


    __________________________________________________ ___

    The areas below my eyebrow and top of my cheek bones
    start to become brown due to steroid usage. I have had
    telangiectasia since my early teens but in a pattern that
    I think looks okay.


    __________________________________________________ ___

    2 years ago. I start flushing after eating and at other
    times for no known reason. At this time my gastro
    system pretty much shut down and food passed undigested.
    I developed malabsorption. Flushing is limited to my face
    and under my chin. Flushed areas are swollen. Ears and
    chest are okay. My face is so tender I can not tolerate
    the nose pads on my glasses. My eyes are affected so
    I cannot wear contacts. I found titanium bridges that
    rest on my nose. Thankfully I have a good sized one.


    __________________________________________________ ___

    My eyes are intolerably itchy. They keep me up at night
    and I find nothing gives them relief. A MD prescribes
    steroid drops and my family MD in Edmonton has a
    phone consult with me and says to take 100,000 IU
    Vitamin A drops with my morning shake. He attributed
    eye issue to malabsorption. This helps. Eventually it is
    diagnosed as Ocular Rosacea. This is my first real
    ‘rosacea’ symptom. It is not an uncommon occurrence
    to experience ocular symptoms first.


    __________________________________________________ ___

    My face develops red swollen areas independent of flushing.


    __________________________________________________ ___

    Areas at the side of my nose, mouth, chin and neck
    become inflamed. The sides and top of the nose and
    chin develop what appears to be a large hive which
    is solid and stays for a week. This swelling eventually
    is what turns into thickened 'orange peel' skin.


    __________________________________________________ ___

    I assume it is allergy related. My neck is getting spotty too.


    __________________________________________________ ___

    My neck area becomes more and more spotty and
    blister/pustules appear and stay. I think it is a new
    manifestation of atopic dermatitis. And since steroid
    isn’t working I apply Elidel then Protopic for a few weeks.
    My rosacea goes nuts so I revert to Elocon.


    __________________________________________________ ___

    My hairline and scalp become inflamed and the neck
    and chest area develop a diffuse redness.


    __________________________________________________ ___

    Age 42. I am now permanently red. My ears, chest and
    full face are inflamed. I cannot tolerate any exposure to
    sunlight and no longer go outside. I rarely will venture
    to the grocery store and have become a shut-in. I have also
    become quite depressed as I can find no one to help me.


    __________________________________________________ ___

    This is after 1 month of Doxycycline and Metrogel.
    My swelling is greatly reduced and my eyes feel normal.
    This picture is taken before I leave for a Gemini laser
    treatment on my full face, neck and upper chest.
    This is the Left side of my face.


    __________________________________________________ ___

    1 hour pre-treatmentwith Gemini.
    Right side of my face.


    __________________________________________________ ___

    1 hour post Gemini treatment.
    I applied a topical ‘freezing’ gel every 10 minutes 1 hour
    before the treatment and took antihistimine and two
    Gabapentin (600mg) so I would not hurt too much.
    The treatment was tolerable. The only area that was
    painful was around my collar bone.


    __________________________________________________ ___

    1 hour post Gemini treatment. I was uncomfortable for
    about 45 minutes post treatment. Then the stinging passed.
    They applied a topical steroid in the doctors office
    and then gave me two baggies with a couple of pieces of
    frozen gauze in each as an ‘icepack.’ Next time I will bring
    my own icepacks, those were pathetic.


    __________________________________________________ ___

    1 hour post Gemini treatment.
    I didn’t continue with icepacks that day once the pain
    had passed. Big mistake.


    __________________________________________________ ___

    1 hour post Gemini treatment. This was the tender area
    during treatment. Probably because I did not apply much
    topical freezing gel here and it is close to bone.


    __________________________________________________ ___

    1 hour post Gemini treatment.
    My left cheek shows some black fried vessels.
    I am starting to swell.


    __________________________________________________ ___

    24 hours post treatment. I started to really swell.
    So began, too late, to apply icepacks. My cheeks and neck became
    so swollen I could not smile. My black spot is absorbing already.


    __________________________________________________ ___

    48 hours post treatment. My cheeks and neck swelling is
    calming down but my eyes continued to swell. I think if I
    had applied ice throughout that first night I would not have
    become this swollen. But, I have steroid damaged skin/tissue
    so who knows.


    __________________________________________________ ___

    7 days post treatment! Still a bit plump and the treated areas
    feels like shards of glass under the skin when I apply topicals,
    which I hope will pass. I am on the mend!


    __________________________________________________ ___

    I am scheduled for another treatment in 4 weeks.

    Happiness is a choice.

  2. #2
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    Hi Twinkle ~

    I hope you're feeling better! You've been through alot. As I read what meds you're taking and then look at your pics I wonder if doxy is really doing everything it should for you. You may want to switch to another antibiotic that'll really knock out the inflammation. I've had luck with Bactrim, a sulfa antibotic.

    It takes experimenting when using antibiotics but if you get one that works then after a month you should see dramatic reduction of inflammation and blemishes. It's wierd but the way you're flaring almost seems more rashy like an allergic response...especially since it travels down your neck and onto your chest. You could have rosacea + an allergy problem. (I have rosacea + cystic acne...)

    Have you gone to an allergist? Do you eat wheat or flour products or dairy products? You might want to try cutting out those out for several weeks and see what happens. It's hard to do but worth it. This may also help with the digestive problems. Keep a detailed journal of what you eat and then how your skin looks.

    Vaseline may not be the best thing to use. It seems "inert" but it really plugs pores and if you have a rashy p&p thing happening in addition to the rosacea then the vaseline could spread it or make it worse. I'm not sure what would be the best thing to "cut" the metrocream with but maybe a cream formulated for sensitive skin that won't clog pores...i.e. something from Olay or Neutrogena or ???

    These are just some things that may help with what you're already doing. Keep us posted on how things go!

    CV
    Bactrim (phasing out), Spironolactone 1x/day, Retin-a cream .05% in the p.m., Neutrogena Cleanser for Sensitive Skin, avoid dairy and usual Rosacea triggers.

  3. #3
    Senior Member Twickle Purple's Avatar
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    Hi Claudia,

    I'm allergic to Sulfa drugs unfortunately. I have tons of allergies. I'm an atopic individual, if I'm not allergic to it now, give me a minute I have gone every avenue possible in my time. Even spending a little R+R at a teaching hospital which was embarrasing and not in the least bit beneficial -- to me! While this last episode was occuring I went completely homeopathic. My DR. from Edmonton (Dr. Trethart, I highly recommend him) was an MD who believed that nutrition was the key. I would get all my supplements through his office. I have too many food allergies to maintain a balanced diet. I have gone the lamb/pear route to see if I could calm my gut, once I started flaring from the pears (always organic, including the meat) I started going the shake route, rice protein and add stuff with that. I'm allergic to everyting eventually so I rotate. When I moved to the Sunshine Coast (BC) I started seeing a local homeopath and she was very optimistic at first, then as time went on she became less so, and from there she had nothing more to offer. I did all her allergy tests, as well I redid an ELISA I had done a year previously with Great Smoky labs to see if A) the test had any accuracy and B) if anything had changed. I am pleased to say that all of the testing was pretty much bang on as was the accuracy of the ELISA. So that was helpful, to her, it showed me nothing. I just got more depressed. I was on the licorice to bring my BP back up, at this time I was peaking at 90/60 which was akin to my suppressed adrenal days. My lows were 80/40 and at those times I could not get out of bed. This was before the rash developed.

    Once the rash began I went to the regular local MD. The homeopath, bless her, she tried, could do no more.

    At first, the skin behavior was very much in keeping with an eczema rash, I was positive that's all it was. The MD, however, was positive it was carcinoid syndrome! She was rather excited about this and brought her books into the office with us. She was blithely unaware that she had dropped a bomb on me. According to her it had to be this, it all fit so perfectly. So I spent the next 3 weeks going through tests. You see carcinoid syndrome is always fatal, but you don't die from the cancer, no this is a lovely drawn out affair in which the unpleasant side effects of the cancer kill you, in about 20 years (with my symptoms, I would have been at about the 10 year mark if this was an accurate diagnosis). Oh, joy. My husband and I were devasted.

    Everyone looks for a Zebra.

    It was not carcinoid, my hormone levels were fine. But nothing I could do helped my skin, it got worse and worse and continued to act differently than usual. I have atopic dermatitis (hence the over use of steroids) so my skin barrier doesn't function all that well, moisture retention is a serious issue for me. Vaseline is the very best thing out there. I couldn't image living without it. This is the gold standard for moisturizing people like me. My pores were non-existent til the rosacea, pimples were never a problem. The 'eruptions' I have now come from below the surface not from anything I am applying. They are like inflammed blisters, but they do not pop and they are not 'removable (I tried, ow ow ow!).

    Since starting the Doxycycline and Metrocream I really do have a dramatic reduction in the inflammation and blemishes. My chest was full of them (I'm not going to post those shots though) and my face is much less round. My eyes feel normal and that is a huge relief to me. I was concerned putting this stuff on my facial skin expecting an eczema flare but the skin has been great.

    My biggest concern was using the Gemini -- would I be better, worse -- would my face fall off (seriously I didn't know what to expect.)

    I don't have typical rosacea, it's not confined to my face and steroid usage is a huge part of it. I hope this all makes sense.

    Twickle Purple.

    Happiness is a choice.

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    Quote Originally Posted by Twickle Purple
    Hi Claudia,

    I'm allergic to Sulfa drugs unfortunately. I have tons of allergies. I'm an atopic individual, if I'm not allergic to it now, give me a minute :roll: I have gone every avenue possible in my time. Even spending a little R+R at a teaching hospital which was embarrasing and not in the least bit beneficial -- to me! While this last episode was occuring I went completely homeopathic. My DR. from Edmonton (Dr. Trethart, I highly recommend him) was an MD who believed that nutrition was the key. I would get all my supplements through his office. I have too many food allergies to maintain a balanced diet. I have gone the lamb/pear route to see if I could calm my gut, once I started flaring from the pears (always organic, including the meat) I started going the shake route, rice protein and add stuff with that. I'm allergic to everyting eventually so I rotate. When I moved to the Sunshine Coast (BC) I started seeing a local homeopath and she was very optimistic at first, then as time went on she became less so, and from there she had nothing more to offer. I did all her allergy tests, as well I redid an ELISA I had done a year previously with Great Smoky labs to see if A) the test had any accuracy and B) if anything had changed. I am pleased to say that all of the testing was pretty much bang on as was the accuracy of the ELISA. So that was helpful, to her, it showed me nothing. I just got more depressed. I was on the licorice to bring my BP back up, at this time I was peaking at 90/60 which was akin to my suppressed adrenal days. My lows were 80/40 and at those times I could not get out of bed. This was before the rash developed.

    Once the rash began I went to the regular local MD. The homeopath, bless her, she tried, could do no more.

    At first, the skin behavior was very much in keeping with an eczema rash, I was positive that's all it was. The MD, however, was positive it was carcinoid syndrome! She was rather excited about this and brought her books into the office with us. She was blithely unaware that she had dropped a bomb on me. According to her it had to be this, it all fit so perfectly. So I spent the next 3 weeks going through tests. You see carcinoid syndrome is always fatal, but you don't die from the cancer, no this is a lovely drawn out affair in which the unpleasant side effects of the cancer kill you, in about 20 years (with my symptoms, I would have been at about the 10 year mark if this was an accurate diagnosis). Oh, joy. My husband and I were devasted.

    Everyone looks for a Zebra.

    It was not carcinoid, my hormone levels were fine. But nothing I could do helped my skin, it got worse and worse and continued to act differently than usual. I have atopic dermatitis (hence the over use of steroids) so my skin barrier doesn't function all that well, moisture retention is a serious issue for me. Vaseline is the very best thing out there. I couldn't image living without it. This is the gold standard for moisturizing people like me. My pores were non-existent til the rosacea, pimples were never a problem. The 'eruptions' I have now come from below the surface not from anything I am applying. They are like inflammed blisters, but they do not pop and they are not 'removable (I tried, ow ow ow!).

    Since starting the Doxycycline and Metrocream I really do have a dramatic reduction in the inflammation and blemishes. My chest was full of them (I'm not going to post those shots though) and my face is much less round. My eyes feel normal and that is a huge relief to me. I was concerned putting this stuff on my facial skin expecting an eczema flare but the skin has been great.

    My biggest concern was using the Gemini -- would I be better, worse -- would my face fall off :roll: (seriously I didn't know what to expect.)

    I don't have typical rosacea, it's not confined to my face and steroid usage is a huge part of it. I hope this all makes sense.

    Twickle Purple.
    TP,
    Very well documented history. You seem to be well prepared to speak with a doctor knowledgeable about rosacea about your case.

    Have you purchased Dr Nase's book? The book has a very good listing of topicals/drugs etc. that rosaceans can potentially use (potentially because everyone is different). Given your excellent job in recording your history, I would even consider remote consultation with one of the physicians noted below (or Dr Nase). You can write to any of them, and you might have a good shot at getting consultation from one of these that primarily deals with rosaceans.

    Are you comfortable with the protocol (settings, passes, etc.) that your laser physician is using? Is the Dr you are using a known physician by the board (Soldo, Bitter, Darm, Crouch, etc.)? In my opinion (maybe other think different on this), I think the laser physician is being too aggressive with you given the facial inflamation received post laser. Ideally, you would be treated with some IPL by a Bitter like trained physician and would have no inflamation nor papura afterwards.

    Also, ice is not necessarily a positive application to rosacea skin. Ice attracts blood flow to the face of rosaceans, something we need to avoid.

    Best,
    Trey

  5. #5
    Senior Member Twickle Purple's Avatar
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    Hi Trey,

    I've got a thorough knowledge of my history but haven't really a clue about Rosacea. That's where this board is a real gift. You all are very knowledgable and much smarter than me on these matters.


    The fellow that I'm using is local. I made the appointment with him then found this board. So, after reading posts here, instead of my first treatment being all out I asked for test spots instead. And I asked alot of questions about treating skin like mine, none of which they could answer. I was their first. Truthfully there are not alot of people in the general population that use as much steroid as me (most that have it while young grow out of this skin problem) and even less that use it on the face. (As an aside on facial steroid application, I eventually switched from Betnovate to Elecon ointment as it was 'face-friendly' -- it's a mid-potency flourinated steroid. And when I tried Elidel and Protopic my initial skin reaction was incredible, no red, no rash... then BOOM, worse than ever. I have not come across a lot of smart doctors, most just do what the drugs reps tell them.) Anyway, short rant. I responded better to the test spots than I'd than hoped so I went for the treatment.

    I have not read Dr. Nase's book. It is certainly something I have considered. I have read up on Dr. Crouch's Web site and his position on steroid weakened skin is to treat the skin before even considering laser. When I mentioned this my Derm said his laser was gentle and he had no concerns about the treatment. In all fairness, I think I got so swollen because I didn't apply icepacks that first night. I'm really careful with the packs. I put the little slushy pack in a pillow case and then roll the pillow case. As the pack becomes 'warm' I unroll a bit, once the case is completely unrolled it's time for a new pack. (I have two so one is always at the ready.) I have an added issue with cool items on my face, I have trigeminal neuralgia (it's what I was prescribed Neurontin for) so given my druthers I wouldn't put anything cool near my face at all. I have order a whole bunch of Natragel products that I'm hoping will help as much as the packs and not cause any other side effects.

    I've followed Keisha06 (Diane) posts, she lives down the road from me (and LL just a short distance away as well). Diane has gone to Dr. Darm and posts very highly of him. LL posted here briefly wondering about post Gemini swelling, she had gone to the same place as I. So Dr. Darm is someone I would consider seeing. I've read that people will respond differently with each treatment. I'm going to try one more treatment and do everything 'right' before I write this off. I'm pretty desperate for relief right now.

    Twickle Purple

    Happiness is a choice.

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    Quote Originally Posted by Twickle Purple
    Hi Trey,

    I've got a thorough knowledge of my history but haven't really a clue about Rosacea. That's where this board is a real gift. You all are very knowledgable and much smarter than me on these matters.


    The fellow that I'm using is local. I made the appointment with him then found this board. So, after reading posts here, instead of my first treatment being all out I asked for test spots instead. And I asked alot of questions about treating skin like mine, none of which they could answer. I was their first. Truthfully there are not alot of people in the general population that use as much steroid as me (most that have it while young grow out of this skin problem) and even less that use it on the face. (As an aside on facial steroid application, I eventually switched from Betnovate to Elecon ointment as it was 'face-friendly' :lol: -- it's a mid-potency flourinated steroid. And when I tried Elidel and Protopic my initial skin reaction was incredible, no red, no rash... then BOOM, worse than ever. I have not come across a lot of smart doctors, most just do what the drugs reps tell them.) Anyway, short rant. I responded better to the test spots than I'd than hoped so I went for the treatment.

    I have not read Dr. Nase's book. It is certainly something I have considered. I have read up on Dr. Crouch's Web site and his position on steroid weakened skin is to treat the skin before even considering laser. When I mentioned this my Derm said his laser was gentle and he had no concerns about the treatment. In all fairness, I think I got so swollen because I didn't apply icepacks that first night. I'm really careful with the packs. I put the little slushy pack in a pillow case and then roll the pillow case. As the pack becomes 'warm' I unroll a bit, once the case is completely unrolled it's time for a new pack. (I have two so one is always at the ready.) I have an added issue with cool items on my face, I have trigeminal neuralgia (it's what I was prescribed Neurontin for) so given my druthers I wouldn't put anything cool near my face at all. I have order a whole bunch of Natragel products that I'm hoping will help as much as the packs and not cause any other side effects.

    I've followed Keisha06 (Diane) posts, she lives down the road from me (and LL just a short distance away as well). Diane has gone to Dr. Darm and posts very highly of him. LL posted here briefly wondering about post Gemini swelling, she had gone to the same place as I. So Dr. Darm is someone I would consider seeing. I've read that people will respond differently with each treatment. I'm going to try one more treatment and do everything 'right' before I write this off. I'm pretty desperate for relief right now.

    Twickle Purple
    TP,
    Steroid induced rosacea is unfortunately a tougher animal to get right. What does Dr Crouch suggest using for steroid induced rosacea prior to lasers?

    It's interesting that your pictures show you after a light test patch. Also caught my attention that you were their first patient. Unfortunately the quality of the physician using the laser is just as essential as the laser being used (especially for older machines). The wrong physician can exasperate your condition.

    I hear conflicting reports on Dr Darm - some good and some bad. I know however Dr Darm uses the N-Lite machine among others, which is supposedly one of the best lasers for "thickening" skin (steroid induced rosacea suffers usually are battling extremely thin skin that needs to be built again). Unfortunately, thickening the skin with N-Lite takes several (at least 10+ times) treatments.

    Trey

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    Senior Member Twickle Purple's Avatar
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    Thanks Trey.

    Dr. Crouch offered no advice on treating steroid rosacea, as far as I found on the 'net he only suggested treating the skin and didn't offer suggest else. Dr. Nase's book sounds a smart investment. I'll order it.

    The trickiest thing with my rosacea is it is not the typical steroid reaction. It did not go away once steroids were removed. I weaned my whole body off the steroids trying to beat this, and for my long-term health. My Derm pretty much stated that I have good old rosacea, how I got it is no longer germane and the actual symptom manifestations are unique to us all really.

    I am fair skinned and a blusher, I would have gotten Rosacea anyway. The full flushing caused by the steroids, aggravated by post menopausal flashes and flushing brought it to where I am now. I also think my food allergies were a huge part of it. I flush from them. I've also the added luck to have what is called aerosal allergy -- so when I'm around something I'm allergic to I will flush, I don't need to touch it I just need to be around it. Most allergens you need to be in contact with. This is like someone with a peanut allergy, some are okay as long as they don't eat the peanuts, others can be ill (or die) if they are around anything with nuts. Flushing is usually the first indicator I have that I'm around something bad for me (which is pretty much everything, forget department stores.) People cannot come into my home because they use product that will make me bloom (my euphemism for flushing). I am much better now. I used to be out with flu like symptoms after big flushing bouts.

    I hate flushing. :evil:

    Twickle Purple

    Happiness is a choice.

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    Senior Member redhotoz's Avatar
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    Hi TP

    Thanks for posting your photos. I've not read a great deal on steroid use although I have done some reading on the topic. I do hope you can find some relief soon.

    Please do keep us up-dated with photos.

    Sending you all my positive vibes!

    Jen
    Currently trying: Apr 06 Bee Wilder's Candida (natural healing) Diet; May 06 Home made red LED array; Aug 06 ZZ ointment.

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    Twinkle - great photo diary!

    I wanted to let you know that no matter how many ice packs I apply after IPL treatments, I always look extremely swollen (like I got hit by a very large truck!) - your swelling photo looks just like me! It will go down after a few days - the swelling is a very good sign - lots of those nasty blood vessels being absorbed back into your system. Please be encouraged!!! You look pretty normal for a great post-laser treatment! Try sleeping with your head up (in a recliner) if the swelling is really bad. I always looked worse in the morning.

    My skin was also very sensitive post laser. You might try refrigerating some aloe (the green stuff you can buy at Walmart) and putting that on your face to cool it - try applying the aloe and sitting in front of a fan!

    Blessings to you!

  10. #10
    Senior Member Twickle Purple's Avatar
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    Hiya Red, I'll keep updating for sure. Once the new red lamp unit comes I'm hoping that, over time, I can demonstrate real progress! I am feelin' the good vibes, and it helps alot!!! You're all so good for my mental health!

    Dear Millie, thank you so much for your words of encouragement. It is reassuring to know that the swelling is typical and that the sensitivity is expected! Sleeping in an upright position was hard and half way through the night I gave up. I just so desperately needed my sleep, by the third night I didn't even bother to try. That's when I lost my eyes Next treatment I will behave 100%.

    Have a lovely day ladies!
    Twickle Purple

    Happiness is a choice.

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