Rosacea

[Pcats]

Hi, I have rosacea, I started with very small red patches on my cheeks, which I didn't really mind so much. Now, 5 months after diagnosis, it's pretty much covering my whole face, it's painful, itchy and hot. I am on antibiotics- which I think have stopped working. I'm waiting to see a dermatologist. I'm usually a confident person but this rosacea is starting to make me hate myself. It's really getting me down. I can't even hide it because it's so dry sometimes. I guess I'm just looking for a way to process the negative feelings I have about it, as I don't wish for it to psychologically and emotionally damage me. I feel my self esteem changing. Has anyone else experienced such painful rosacea?

[NoPreconceptions]

Hi,

Welcome to this forum. I hope the help, advice and support you receive helps you on your journey :o)

I can truly relate to your condition and how it's affecting you. I was diagnosed with rosacea in Sept 2021 following a covid infection. It went from zero to 100 in a couple of months, affecting the whole of my face. I too struggle with burning/reddening, itching and pain, as well as a granulomatous form of rosacea affecting my mid face, mainly my chin, which has caused unsightly lumps and bumps.

Sadly it's a really difficult condition to treat - what works for some doesn't for others, so it can be really frustrating. For me, a 3-month course of antibiotics (doxycyline) seemed to slow the progress for that period, but once the course had ended the condition continued to progress. It really isn't the same for everyone so please don't despair. My immune system has been particularly aggressive since contracting covid.

An appointment with a dermatologist will help you to decide which other treatments might be suitable for you. There are several topical treatments including Soolantra, which works for a lot of people. I believe it's expensive so the NHS aren't always quick to prescribe it but it's worth being aware of.

In respect of the drying affects of rosacea, it's important to find a hydrating moisturiser that works for your skin. Since my rosacea diagnosis, I've spent a fortune trying to find something that's gentle enough for my skin to tolerate. My holy grail is currently La Roche Posay Cicaplast. It's supposed to soothe irritated skin and accelerate the skins natural repair process. It's antibacterial action also protects skin from infection. It may be worth trying? A little bonus for me is that I can slather it on at night and enjoy the fact that it leaves a white cast so my red hot skin looks slightly little less visible ;o) A little less during the day works under make-up too :o) Cerave is another brand worth exploring. I use their hydrating cleanser which may work for your skin, especially whilst you're suffering with dryness.

It's admirable that you recognise the negative feelings around your rosacea can adversely affect your psychological and emotional wellbeing. Getting a handle on those early in your journey will pay dividends. I was so unprepared for my condition that I went into a downward spiral mentally and emotionally, and refused to acknowledge that this would only fuel the fire - quite literally!

Apologies for the long drawn out response, but I hope it helps in some little way xXx

[CarolinChangingFaces Partner]

Hi Pcats

Welcome to the Changing Faces community. I can hear that your Rosacea is bringing up some challenging physical symptoms for you as well as having an impact on you emotionally. I understand that you are waiting to see dermatology and feel your current treatment has stopped working which does sound difficult for you.

It's really positive that you are exploring ways to process your thoughts and feelings around it all and that you have felt able to share with our community about your situation.

I hope you find this a helpful space to connect with others as many in our community have shared similar experiences of their condition affecting their self-esteem.

You may also be interested in some of our online resources which cover this topic too and include some tips and advice which are linked on our website here: changingfaces.org.uk/advice...

Take care,

Caroline – Changing Faces

[MaveB]

Hi there,

I'm so sorry to read how you're feeling and can relate totally. I'm a long term; mis-diagnosed for ages; with a rare progressive phymatous form as a result; sufferer. (Please read my bio if you're interested in the details, I don't want to bore you ☺️) For me, rosacea is a condition very overlooked for it's physical and psychological impact, and often written off as simply a cosmetic issue, particularly is such challenging times for the NHS.

You sound as if you're possibly diagnosed, as you've had antibiotics (limited effects commonly reported) which is a good start. Are you fortunate enough to have been referred for a full dermatological assessment? If not, do consider pushing for this. In my own case I ended up at a well know London teaching hospital, where at last I was listened to and treated properly.

One line of modern thinking is that the skin barrier becomes compromised, which becomes a feeding ground for bacterial inflammation associated with rosacea. Below are also self help things I tried with some success:

Worked out what some of my personal triggers (everyone is different) caffeine (increased the flushing so I gave it up, flushing dropped around 90%) sun: I always wear factor 50 now outside, wear a brimmed hat if I"m in the sun, but preferably avoid); wine (I don't drink it much, but when I do flushing starts) stress: (always increases flushing for me)

Avoid facial products if possible with perfume, colouring, alcohol etc, keep as near to natural as possible. Even shampoo & conditioner too as it can spill on to the face. Brands like Cerave & Cetaphil have a few basic but effective/inexpensive products, depending on your original skin type. But there's lots of other brands out there too. It's a trial & error process. Every couple of months I have a deep clean facial for sensitive skin, which unclogs pores etc. (a tad pricey I know, but has been effecitive)

In my own case, the above has calmed my skin quite a bit and I've not had any progression for a few years now thankfully. I had some treatments too, please see links below,( the combi' of these and changes to the things above have helped immensely) I'm not sure it this applies to you, but I'm suspicious over links between female hormones and rosacea. I never had any skin problems prior to the menopause. Others have suggested links with pregnancy. Could be something to discuss with your GP?

It's worth reading up to educate yourself on the condition, in my own case this was empowering when meeting with medical professionals and made for more constructive consultations. Here's a few links below to a great dermo' website:

dermnetnz.org/topics/rosacea

dermnetnz.org/topics/iverme... (this is soolantra, a treatment that NoPreconceptions mentioned)

dermnetnz.org/topics/isotre... (this is a course of medication given to me by the hospital which was helpful)

Above all, take care of yourself, keep chatting whenever you feel like it. You're not alone, there are many rosacea people around.

M

x

[kitcat72]

Hi Pcats. Yes I’ve had it since 2013, pustular painful and itchy. This threw GP diagnosis since it looked like an allergic reaction. I can’t stomach the antibiotics so never succeeded with them. Azaleic acid helped but only after weeks of continuous use. I take low dose naltrexone for which I obtained a private prescription as my GP would not consider off licence treatment prescription and derm referral could ´take years’ . LDN is anti-inflammatory and is very safe. Much research is being carried out on its benefits outside off high dose for opiate misuse. As I am a perimenopause female I recently started using estriol cream on my face to much success, again this is off licence use. Unfortunately with GP’s they tend to have little knowledge about the condition and some no care for the psychological impact. It really is suck it and see. If one treatment doesn’t work, try another. Don’t let doctors fob you off. You will have to educate yourself. Good luck! X