Rosacea treatment dead-end

[Rock_Island]

Hi there, I joined CF last year, first time posting on this forum. This is a bit of a splurge, sorry, but if anyone has any thoughts on how I could move forward I'd welcome the input.

I'm a man in my late 40s and have had Rosacea for a long time now - call it 20 years, though always had very sensitive skin, very prone to flushing. I've tried all sorts for it in that time and it's changed how it manifests quite a bit in that time too. Of late, it's really my nose that's the biggest problem: lots of open pores, frequently flares and gets very red and raw looking, and feels very hot and swollen. I've also developed Blepharitis, which gives me a lot of trouble: eyelids get really red and swollen, eyes feel hot and irritated. I also get papules, especially on the scalp and neck, which can get quite bad. And there are still the old constant of flushing - face, ears, neck. Hands also go all sorts of colours. Main triggers for me seem to be physical - environmental/weather, exercise etc, and emotional (less lifestyle - wine, coffee etc I'm ok with) . As lots of people on this forum will know and have commented, it's a really difficult thing to deal with and, though I've learnt some ways to handle it over the years, it still hugely negatively affects my confidence, self-esteem, mental wellbeing etc.

Currently I'm on Lymecycline, Azelaic Acid, Tacrolimus, Carvedilol (beta blockers), Brimonidine (which I use for the nose). I've tried other things in the past, including Doxycycline, Ivermectin (Solantra). I use emollient cream and I have a whole regime for the Blepharitis - heated eye mask, drops, Blephasol cleanser. I also used the CF Skin Camouflage Service last year, and am now using the camouflage cream, powder etc. I've been to the GP, dermatologist and optician about it. Optician says I'm basically doing all I can for the Blepharitis. The experience with the dermatologist has been really frustrating: took ages, then eventually get a referral for laser therapy but when I go the consultant told me it's not appropriate because I don't have fixed redness. He said something less severe like IPL might work, but that's not available on NHS and I did try it years ago and it didn't help much. The one thing that I haven't tried which I think might help is Isotretinoin, which I've seen positive reports of on this forum and elsewhere, but the dermatologist is very reluctant to put me on that, saying there's a policy now that it should only be people with sever acne who get it, other than for exceptional cases. All of what I'm doing now helps mitigate Rosacea but only up to a point. It's still very much present and a daily source of discomfort, anxiety and dismay. Even the camouflage I find is only effective up to a point - when I get a flare up it shows through.

So, all in all, I'm now at a bit of a loss and feeling pretty despondent. I could look into IPL. I tried it well over a decade ago now and things have changed since, so it might do something now. On the other hand , it might not and I'll have wasted money I can't afford. I could try and push to get put on Isotretinoin, but have doubts I'd have much joy. Thanks for reading and if you have any thoughts on any aspect of this I'd be interested to know them.

[Botchedrhinoplasty]

Hi lovely, I've just finished a 6 month course of isotretinoin for swollen thickened nose skin, and it didn't help at all, in fact the pores are much more visible now. So it defo doesn't work for everyone. Although perhaps my dose was too low (20 mg per day). My situation is somewhat different to yours though as I appear to have developed rosacea/rhinophyma after a failed rhinoplasty in August 2023. My nose looks awful and getting worse by the day. I'm in my 40s like you. I'm thinking about trying fractional co2 laser, but I will have to wait as you're not allowed to do this straight after isotretinoin. Not much advice for you I'm afraid, but just wanted you to know that you're not alone in this predicament.

[Rock_Island in reply to Botchedrhinoplasty]

Thanks - appreciated. Rhinophyma must be hard to live with. I thought my nose might be early stages of Rhinophyma but the consultant at the hospital says it's not, and tbf I don't have the bumps and don't think the skin has thickened. It has open pores and when it flares/flushes it does swell but then recedes and the Brimonidine does make it recede (albeit only for so long and then there's a rebound effect). Isotretinoin may well not work but it feels worth giving it a try. Although your experience of it making it worse does give me pause

[Botchedrhinoplasty in reply to Rock_Island]

I think I've just been unlucky. For lots of people it does seem to work!

[EvaChangingFaces Partner]

Hi Rock_Island , I wanted to take my turn and say thank you for being part of the Changing Faces online community and for sharing about your situation with us. It sounds like you have been through a really challenging time over the years with lots of change with your rosacea symptoms and that it has had a big impact on your emotional wellbeing and how you feel about your appearance. I can hear the distress you're feeling from having this condition and the expenses you're having to incur because of it.

I can see that another member of the community have offered their experience with other options and hopefully you will find something that works for you and do let us know how you get on. I hope that you continue to find this a supportive space where you can feel less alone in your experience.

Take care,

Eva - ChangingFaces

[MaveB]

Hi there Rock_Island,

Rosacea is such a challenge isn't it, so many unknown causes and types it's hard to nail down! I so hear your pain, I've been there. Please read my bio', if it's helpful, as I went on to develop rhinophyma from my nose being mainly affected. In my own case the transition from rosacea to rhinophyma was insidious. I also struggled to get treatment from local dermatology services and ended up at a central London hospital after years before it was taken seriously.

Isotretoinin may be suitable if you have extremely oily skin around your nose or as part of rosacea generally. I have a very oily T Zone face and have used it successfully.. Over productive oil glands on the nose can increase the chances of rosacea developing into rhinophyma. Isotretionin basically dries up oil production, which in my case causes inflammation, soreness, puffiness and changes to the skin. I would say you could definitely be regarded as an 'exceptional case' for treatment, as nothing else is working for you and you're facing physical and psychological challenges. Also, it may just protect you from the onset of rhinophyma, as it's your nose that seems mainly affected.

My dermatologist has explained to me that isotretoinin is used differently for rosacea than for acne, it's a longer lower dose course. And if it works, after the course, then a maintenance dose of 1-2 low dose tablets per week can be continued.

I wonder if a dermatology second opinion would be helpful to you? Maybe to a major dermatology centre, you have the right to choose where you go, I found this out after many frustrating years of not feeling listened to locally.

In my own case cutting out caffeine dropped the flushing enormously.

Best wishes for now, keep chatting.

M

☺️

[Rock_Island]

Thank you for this. I wouldn't say skin around my nose is so oily, though do remember it used to be. Even so sounds like Isotretinoin is worth a try. I've contacted my dermatologists secretary to report back on the laser referral and request to be considered for Isotretinoin, so will see where that gets me. But will definitely keep in mind about getting a second opinion. Thanks again