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Need help deciding how to proceed with enlarged nose PHYMATOUS rosacea-PLEASE RESPOND

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  • Need help deciding how to proceed with enlarged nose PHYMATOUS rosacea-PLEASE RESPOND

    Dear forum members -

    I have been off the forum for a little while as I have been feeling a little overwhelmed and needed a bit of time away.

    I am, however, very worried about my swollen and enlarged nose. A plastic surgeon who I have seen in the past told me about a year ago that if I did not treat it, I could potentially have a nose like Karl Mulden. This, of course, put me into distress. I was receiving IPL on my nose by this surgeon which helped for a time. I have had rosacea for 16 years but the nose swelling did not start until two years ago. I have definitely noticed a change in my nose. IT IS LARGER. I reacts to warm food, exercise, gum chewing, and all of the usual trigger you can imagine. I have not been able to find a good derm until just recently so he has not been able to observe the change in my nose and is not convinced it is phymatous rosacea, which I am positive it is. I am seriously on the fence about taking Accutane in a very low dose as a means to shrink the nose and mitigate further damage. I am not sure that the derm will give it to me but he does dispense it and I suspect, after hearing from my plastic surgeon, will understand it may be necessary. I am very, very fearful of taking this drug but I cannot risk my nose progressing to rhinophyma, if that may be the case. My dear mother, who is now 92, suffered from bad acne when she was young and has all the scars to prove it. Even later in her life - in her 80's she would get cystic pimples on her nose which would rapidly turn into scars each and every time. Here nose looks TERRIBLE. Two years ago, I gave her my metrogel to apply every nite and she has not had a bump since. My mother does not have rosacea but she did have acne.

    I would sincerely appreciate ANYONE responding with comments or guidance. I see my derm this Friday November 27th. PLEASE folks, I would be so very grateful for any help before my appointment.

    I await your responses.

    Many kind thanks.

  • #2
    There have been a lot of postings over the years from people who have had negative side effects (increased flushing in particular) from Accutane. Try the earch engine to review them. I personally believe that IPL is not really a great treatment for anything other than mild Rosacea. You might want to explore other kinds of laser treatments as well as the opinions of other doctors. It might take a little time now but prevent you wasting time and money on something that is not effective for your particular type of Rosacea.
    Arlene.

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    • #3
      Desperate and panicked about enlarged nose PHYMATOUS rosacea-PLEASE RESPOND

      Thank you very much Arlene. I am feeling totally desperate and panicked. Does anyone else with this type of rosacea have comments. I am feeling quite terrified and am not sleeping as a result.

      Please?

      Thank you.

      Wendy

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      • #4
        Hello Wendy, I have had Rosacea for 5 years, and in the last year or so it has also been affecting my nose quite badly. I get a really bad flare up of papules and postules every 3-4 months. Lately they have been on my nose and my most recent one even affected my breathing from the swelling. I was also recently diagnosed with Colitis. My flare often happen when I am having digestion issues and also with high stress levels. I have tried many meds but nothing helps permanently. Accutane would not be something I would resort to unless it was my only option. I know some people who have completely changed their diet and lowered stress levels and have seen a change. They say Rosacea is very much related to your digestive system. I even see it with myself, if I eat clean and avoid stress, my flare ups happen much less often. I have tried IPL and it's only a temporary fix. The minute you get another flare up, all your money goes to waste. Hopefully this helps, you are not alone! Thanks!

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        • #5
          Thank you very much Michelle for your response. I will try to figure things out today. Perhaps go back to my hyper-allergenic diet. It is soooo hard but better than the alternative I suppose.

          All my very best to you.

          Hugs

          wendy

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          • #6
            Hi Wendy

            I'm not sure if you are so panicked right now that you would be willing to do anything, but when in a state of panic, we're usually best off doing exactly nothing.. And wait and take the time to find out your options and the risks involved with them. I rushed into IPL, a doctor who was all too quick to say I was the worst patient he had seen bladibla and my only chance was basically to have IPL. With Him of course. I was panicked too and felt it had to be done yesterday and rushed into it and it made my rosacea permanently (much) worse. Your doctors response, tellin you more or less that you can end up with a nose like Karl Mulden, really? What sort of advice is that? The sort of threat only he can take away as long as you pay him?

            Do others also see your nose being enlarged? I ask because we scrutinize normally every little change. I also think my nose has become bigger with the years, less slim and petite, so to say. More bulky. I can also see it in picture comparisons, but others don't see it they say and I don't flush or get p&p's on my nose either, In my case it might just be the ageing process. I wouldn't know about your nose of course!

            If your nose gets red and inflamed and oily with p&p's then roaccutane might help, I think, but like arb161 wrote, it is known to increase facial flushing and redness in general. It's a bit of a gamble I'd say.. And if your nose doesn't flush badly, I wouldn't go for IPL and laser on it either. They can do harm, or good, but who's to say which of the two it will be for you? Maybe sticking to a good healthy diet, taking anti inflammatory supplements could help? Keeping your flushing to a minimum helps me too, I have meds for that but however one can stay unflushed, it's all effective. And have you ever tried red light therapy? You could aim that specifically at your nose and it seems far less invasive as lasers.

            Hope you feel a bit less stressed soon x
            My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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            • #7
              Queta's old posts might be helpful. She had success with quercetin/bromelain and then later went to fresh garlic. It helped her swelling.

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              • #8
                I cant tell you what works because I'm trying to fend it off myself but I think I'm succeeding. Problem is, I'm doing so many things its hard to tell what is actually working.
                I cant tell you what i think the key is to fight this is . I think you need to change the oil content of your pores and this can be done with bifidobacteria, metronidazole, and omega 3 and healthy eating. I also think you need to rid the pores of mites with ivermectin.

                In the meantime... biore pads, tea tree washing and salicylic acid.

                Thats just my opinion based on my own so far experience. I am not cured, but it has not gotten me beat either.

                Comment


                • #9
                  Perhaps you could test ZZ cream on your nose? Just your nose.
                  I used to use ZZ all over my face, but reached a point where I found it had achieved all it was going to and the constant low level irritation (not experienced by everyone) was doing me more harm than good.
                  I started using topical niacinamide gel and have not looked back. Along with oral as well.
                  But I have continued to apply ZZ cream to my nose and upper lip area on a daily basis, mixed with the niacinamide gel.
                  My nose used to be my worse area. The flushing was so severe and whilst it never reached bulging and deformed state, it certainly was puffy and swollen for periods of time.
                  ZZ cream, along with my other regime helped reverse that.

                  Accutane.
                  If you are dead set on trying a vitamin A, I would strongly encourage you to consider a food source first.
                  Liver is the best option. And it is least likely to provoke inflammation.
                  I have tried capsules of vitamin A derived from cod liver. You can purchase them from iherb. They must contain just the vitamin A, and not the associated fatty acids. You'll certainly react adversely to those if they do.

                  I tried these earlier in the year and at first they helped my over all condition and then they turned on me. However, many acne patients love them. It is MUCH safer than taking accutane and can be just as effective.

                  Or, you could eat liver. Liver is natural and balanced with other nutrients, particularly choline (important) and other vitamin B's.
                  I have recently started eating it again myself, and thus far, fingers crossed, I have not experienced any overt negative reactions.
                  I only eat 16 grams every second or third day. I am proceeding cautiously.
                  16 grams of calf liver provides around 5070 iu.
                  You can work it out more accurately with the aid of the below link.

                  http://nutritiondata.self.com/facts/...roducts/3469/2

                  Let me clarify what I mean, by my statement, 'I eat liver'.
                  Liver to me, is the most vile thing to have ever passed my lips. I loathe it so much, the vomiting reflex is triggered.
                  So, I implement the following, suggested by others in my local health group.

                  I purchase a slab of calf liver, which is supposed to have the least offensive taste.
                  I cut it into 16 gram servings and freeze them individually.
                  Cutting a serving of frozen liver into tiny pieces is easy. I put it in a kitchen sieve and run warm water through to remove most of the blood.
                  Then I place in a small bowl, sprinkle with salt, cover and microwave for about 30 to 40 seconds, until it is cooked well. No sign of pink.
                  I remove the pieces from any remaining juice, place on a small plate and put in the freezer for five minutes or more, until the liver is stone cold.
                  Then, I place tiny pieces in my mouth with the aid of a teaspoon and take a swig of water or orange juice, and swallow, without chewing. It works. It is completely doable.
                  I get my dose of vitamin A, without torture.
                  Some people love liver. I have not met many of them though. When I mention the word liver to most people, I am met with expressions of contorted faces lol.

                  Anyway, on to what you will want to know. Do I react badly? Sometimes I have a small transitory increase of flushing, but it is minimal and I do believe it is helping me over all.
                  Liver comes with other nutritional benefits as I mentioned.
                  You could also try chicken liver. I have not tried it myself, but I am considering it as I have hashimoto's and it has been suggested I avoid all mammal products for a period of time and then see if my antibody levels drop.

                  I also recommend you get a spot urine iodine test done. I'd recommend that to everyone. I was deficient. Lower than I thought. I thought it was a mild deficiency, but actually, it was sitting on the border of moderate to mild.
                  Last edited by Mistica; 28 November 2015, 02:52 AM.
                  Previous Numerous IPL.
                  Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                  Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                  Treating for gut dysbiosis.(This is helping).
                  Previous GAPS diet. Have now introduced lots of fibre.
                  Fermented Foods. Intermittent fasting -16-18 hours.
                  Oral Colostrum. Helps reduce food reactions.

                  Comment


                  • #10
                    THANK YOU SO MUCH Mistica and Nat, and to others who have answered. I am so grateful for you.

                    I chose not to take the Accutane route as I am just too afraid. We may decide to try the anti-malarials to try and knock out the inflammation - but I have not decided yet. Yesterday was by far the worst day of my life with this condition. I was so panicked that I asked my husband not leave me alone and so he stayed home from work. (Yes, he works on Sundays). I think I managed quite well with the skin part of the disease before it hit my nose. After that, I started to decline. I am terribly depressed. And my mother and my closest girlfriend at work both tell me they can see my nose when it is swollen. They do not tell me to be mean but instead because I ask them for the truth. But there are also times when it gets smaller. My nose is so enlarged today that it is quite dry and is impeding my breathing. Some how I have to find the strength to just try and be calm. I hate when I wake up in the morning because I know what I will see will send me off into the deep end. But still, I am trying - trying as we all do. I know I am not alone, but I have never felt as low as I do now with this condition. I has taken over all the space in my head. There is no room left for me to think about anything but my face. That is the simple truth.

                    Thank you all for writing me.

                    Wendy

                    Comment


                    • #11
                      Hi wendykay, you won't end up with a big nose. You will be treating it. The folks you see in photos with disfigured noses are people who didn't treat it. Don't worry, friend. You'll find the remedy that works for you. And remember that lasers and electrocautery can reverse any tissue growth and let you keep your normal sized nose. Take a look at some of the threads on garlic and swelling. They're quite interesting. And Queta, one of the members with phymatous, has been greatly helped by it. She said she's basically in remission now. Her posts on garlic's positive effects on her swelling are very encouraging for phymatous rosaceans.
                      Last edited by hg24; 30 November 2015, 07:08 PM.

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                      • #12
                        Oh so sorry to read Wendy
                        Have you already tried or thought about using anti-inflammatory creams on your nose, like metrocream? Or finacea? Maybe even the new Soolantra, which people seem positive about?
                        Stay strong! This is a depressing and daunting disease to have. You're not alone, maybe that helps a tiny bit, many are in distress and pain at this very moment over the same rosacea struggles. I hope perhaps one of such creams mentioned might help you turn this around again.

                        hugs
                        My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

                        Comment


                        • #13
                          I have to say that as I reread the message from Mistica, particularly "Liver to me, is the most vile thing to have ever passed my lips. I loathe it so much, the vomiting reflex is triggered", I started laughing so hard that i flushed. I flushed but I did not care because it was so nice to laugh OUT LOAD at some part of this condition. It just struck me as so very funny. Thank you Mistica for that LOL. I loved it.

                          Thank you hg24, nat and all of you who have responded. It truly means the world to me. It truly does.

                          THANK YOU ALL FOR YOUR HELP.

                          Wendy

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