Hi everyone, I've been suffering with flushing and burning on my cheeks for a few years, I've had pulsed dye laser, ipl and am taking propranolol, all these things help but I get flushing and burning the same time everyday, between 5-8pm, it's so hot and frustrating... Anyone else suffer this, and have any solution? I'm under a vascular surgeon with the possibility of getting ETS surgery
Thankyou
Hi there,
I too have had extreme facial flushing for 11 years, as I'm female, this was initially put down to my 'age'! However, it was later found to be rosacea, and I went on to develop a rare Phymatous Rosacea, otherwise known as Rhinophyma.
I've had some antibiotic treatments over the years which haven't helped. But, I'm due to meet with a consultant dermatologist this week (at last, there's very little treatment on the NHS for Rhinophyma), with a view to a course of Roaccutane and/or laser surgery.
I am fascinated now by rosacea, and it's various forms, as well as trying to manage it, please can I ask what is Neurogenic Rosacea?
In relation to facial flushing, I have focussed on tracking down some of my triggers, I hope the following might be helpful to you: I gave up caffeine, this has reduced facial flushing significantly; wine is also a trigger too. I'm what's known as an 'internaliser' so I don't shout, or run around slamming doors when I'm stressed, but experience huge increase in facial flushing. Also, if I'm tired and don't slow down I go into flushing mode, I notice that you suffer flushing in the evening time? Obviously, none of the above is a cure for the underlying condition, but an awareness of personal triggers has definitely helped in my case.
All the best to you 
Neurogenic rosacea is just a baseline pinkness but with transient flushing that burns and painful, I've had lots of laser treatments and am on a beta blocker for the flush but I still have episodes usually between 5-8pm, indoor heat is a major trigger but even without I can still flush, sometimes it looks fine but I still burn, sometimes it looks pink and I burn, sometimes it's just one cheek that burns, got an a appointment with a vascular surgeon on the 13th so hopefully they can shed light on it, hope you get the help on the NHS for your issue... Thankyou for the reply
There's so much more to rosacea than widely understood, once you get into it isn't there! The variants are many. Phew! I hear you about indoor heating, I sit as far away from radiators as I can find. Thank you, and good luck with with your next appointment too
Keep me updated of your progress please
Will do, I've spoken to a consultant this week and he's offered me a laser patch test this week, which I'm going for. Rhinophyma (Phymatous Rosacea) distorts the nose shape unevenly. They use laser treatment to try and re-sculpt a bit.
A disappointing week, the consultant told me I have the wrong kind of rosacea/rhinophyma for laser surgery. It would only add to my problems, due to scarring. My two remaining choices are to live with it, or have a full rhinoplasty (nose job), not available on the NHS sadly.
I comfort myself in the knowledge that people have so much more to contend with in life, and apart from all this, I'm a relatively healthy person.
Wishing you good health and better luck x
I'm sorry about that outcome, I'm afraid alot of things rosacea related are thrown out by the NHS due to the, it's cosmetic tag, have you tried isotretonin that can shrink your condition I believe, that should be free, or on prescription anyway...
Thank you Rosaceaman,
I'm also learning the hard way over rosacea, you're so right, it definitely has a cosmetic tag doesn't it, as opposed to the progressive condition it is for many of us.
Yes, isotretonin is my next try, but I now have to be referred back to general dermatology for that, as I was at the laser centre this week. To be fair the consultant was just honest with me, I think she felt awkward that I'd got that far and no other doctor had ever looked as closely as her with ultra-violet light at my nose area.
In the meantime she has prescribed me a topical cream called Soolantra, it works on the dermadex mite, that we all apparently carry, but for some of us it causes Rosacea flare ups.
All the best for now and good luck
Hi MaveB,
I know this post is 2 years old, so you probably won't even see this, but in case you do, I hope you don't mind me writing to you.
I was diagnosed with phymatous rosacea a couple of months ago when I went to see a dermatologist privately about some odd lumps I was getting on my nose (rhinophyma).
I was utterly shocked by her diagnosis because I wasn't even aware that I had rosacea at all! I'm 67 and I never knew, so to have such an advanced form, was devastating. I am not a confident person by any means so any facial disfigurement, especially a progressive one, will hit me hard.
(I did go to my GP 7 years ago with symptoms of what I now think was occular rosacea but he was no help whatsoever.)
The dermatologist didn't offer me any advice at all so I have been researching as best I can online. I have bought some Soolantra cream which I use once a day at night and some azelaic acid cream which I use in the morning.
I just wondered how you were getting on, 2 years later? I did see an episode of "The Bad Skin Clinic" last week where a patient with severe rhinophyma had his nasal lumps lasered off at the clinic.
Did you try the Roaccutane you mentioned in the post to Rosaceaman? Or isotretonoin treatment?
If you get this post, I'd love to hear from you. Knowledge is power, as they say, and the NHS doesn't seem able or willing to help much. My understanding of the condition is, it is quite rare and rhinophyma affects mostly men. Being female, just our luck, eh! 😢
Anyway, all the best and take care,
x
Hello grumpyold,
Thanks for your message! I'm always happy to chat with fellow rosacea friends, especially those with the rarer phymatous type! It truly doesn't surprise me that you've had to seek private treatment, as I did. There appears to be very little understanding generally over this type of rosacea, and if rhinophyma and you're female, then none at all. Like you I didn't even know I had rosacea! I had to eventually put my own diagnosis, from personal research, to a consultant dermatologist, after a few years of local NHS dermatology clinics with no help at all. Finally, she agreed it and told me the only options for treatment are private. End of consultation🤷♀️
For the past two years I have been seen and treated by Guys & St Thomas Hospital Dermatology Centre in London (not sure where in the country you are). I started with a private consultation and the Dr redirected me to the NHS list (what a good chap!) as they are knowledgeable and treat the condition there. I was first referred for laser treatment, but on close examination, the rosacea was too advanced for laser surgery as it areas of the nose had become fibrous and not still at a sebaceous stage. Therefore a high risk of scarring. (I already have scarring on my mis-shapen nose due to a skin shave 6 years ago) So I was sent on to their general clinic where I have been treated with isontretoinin (which is accutane under a generic name) for the past ten months. My skin is in better condition generally, (I have a highly oil T zone combination complexion), the meds dried it out, closed up the enlarged pores and reduced the inflammation. The underlying skin oiliness puts us at higher risk of rhinophyma, so meds help treat the potential for progression, but do not reverse the damage, if that makes sense. I've been very happy at GSSTH, they've just discharged me but on a self-refer basis if/when I get another flare up.
I've also worked hard over the last few years on self management too, so that and the med's seem to have prevented any further progression so far. For example, identifying my triggers, as I have flushing rosacea. Also, changing facial and hair products to those that do not risk irritating my skin at all. I'm also 67, and this all started in my 50's, so there's an unanswered question over a possible link to hormonal changes in my head over it. The soolantra is helpful in treating demodex mites which live on the skin and can irritate rosacea. I also use tea tree oil optical wipes for my eyes as I believe I also have ocular rosacea, which has led to eye lash loss. I put a drop of tea tree oil in my shampoo to work on the scalp too, as demoted mites are believed to set up home there as well.
I feel your pain, it's not a great condition is it and bang in the middle of our faces hey! I've spent many years of distress over it, but am gradually in a better place of acceptance as I've worked hard to learn about it! You're right, knowledge has proved to be strength in my own case, both in managing the condition and feeling empowered to work assertively and constructively with health professionals.
So, here's some ideas, please ignore if not useful, and remember that I'm not a trained medical professional. All I can tell you is that all of my strategies above or below have been endorsed as appropriate by consultants at GSTTH
1. Ask your Dr about laser treatment or a skin shave for the nose if you feel necessary. But, do press them on the scarring potential. I wish I had over the skin shave as it wasn't ever mentioned. And it added to my emotional woes. Is your rhinophyma at an appropriate stage for laser treatment is a good question to pose as well. (Mine was beyond as it took too many years to diagnose.
2. Ask your Dr are you a candidate for isotretionin, now commonly used to help treat underlying rosacea.
2. Track down your triggers. Mine were caffeine, wine, sun. These may not be yours of course.
3. Review your skin care products and routine. In my case a bit of a bonus is that it's all simpler and costs a lot less! No fragrance, alcohol, oil or colouring in my own case. Same for shampoo, no silicone, parabens etc.
Be hopeful, in my case I believe I've helped prevent progression, but everyone is different I know. Also, we're much more that just our noses, this has taken me years to learn and I don't mean it to sound glib to somebody like yourself who is new to their diagnosis.
Take care for now, hope the above is a little help & support to you. x
Hi MaveB.Thankyou SO much for replying and for such a wealth of helpful information. I am in Norfolk. It was Diamond Skin clinic in Norwich who diagnosed me. I was worried that the lumps on my nose were some kind of basal cell carcinoma. Relieved they aren't but horrified by a rhinophyma diagnosis. I only had occasional flushing, no pimples nor pustules nor other symptoms. Just bam, straight to advanced rosacea.
The last Bad Skin Clinic on Wednesday on channel 17 last week showed laser surgery on a patient. That clinic is in Harley St, London. I shall have to investigate what facilities Norfolk has to offer. Travelling is a strain for me. I have Aspergers and get overwhelmed by noise, traffic, people, hustle and bustle and anything out of my comfort zone. And boy, is this out of my comfort zone! Lucky us, eh.
I'm glad you seem to have accepted the condition and are at peace with it. I have a way to go on this score.
Thankyou again for your support.
Good to know I'm not alone.
Take care,
xxxxxx
Hello Rosaceaman . I just wanted to welcome you to the Changing Faces Community and thank you for posting your thoughts on here. It sounds like you've been through a lot in the past few years and still have more coming up in terms of treatment in your journey. Hopefully, as the community grows, you'll find more people to connect and to share your thoughts with. Take care,
Eva - Changing Faces
Thankyou, yes it's been an horrendous few years with suicidal thoughts, no understanding from the medical profession, lack of knowledge.... Its demorilizing when you go to the doctor or dermatologist and hit a brick wall as they have not got a clue
Rasaceaman, I'm genuinely saddened to read how low you have felt over this condition. But, I hear you loud and clear! The psychological impact is horrendous! In my own case very up and down.
It's an underrated condition, from my experience, because it's not physically life threatening, and the constraints on our NHS system, it's not taken too seriously, especially if it's a sub-type not easily treated.
In my own case, after a few years of going round the houses, various antibiotics, even a biopsy (which has left scarring) I ended up researching myself, and presenting the dermatology team with my information. I had to say to them 'I think this is Rhinophyma, do you agree, I need to know, yes or no!' He went and got a senior colleague who at last examined me more thoroughly and agreed. Then told me, it's cosmetic, no hope of NHS treatment.
Five years down the line, I'm at last being seen on NHS, knowledge has become strength, I can make a better case these days.
Do take care of yourself, all the best for now x
Struggling to cope after botched laser procedure on face
Living with a facial disfigurement
No hope anymore after failed surgery. 
I need help accepting myself
