roseacea - is it all doom and gloom?

[notactuallyme]

Have suspeected roseacea. Hot flushes over last few months, itchy mildly flaky eyes over last two weeks, and pink sore skin on forehead and nose. Gp given me some gel, using eyedrops and teatree oil on eye margins. But, the internet has terrified me. Images of thickened skin, red faces, huge nosees and talk of depression and disfigurement. Really? Or will it be ok?

Bump

As you can tell by my name I was recently diagnosed with pustular rosacea which suddenly appeared.
I was on antibiotics for 3 months, but all pustules disappeared after 2 days.
I think it's hormone related..I am 52 and on HRT.
I get spots on my chest and neck which are probably sun related...

I know what you mean about the internet...it's not a bundle of laughs. There are so many different types of it....

Thank you - I have a few spots, and looking back other things 'fit'. Its my eyes I'm finding awful -constantly irritated. (Not to look at though, no point using antibiotic eyedrops).
Was yours really sudden? Mine was literally within 2 days of an itchy eyebrow. Then this awfulness for the next few weeks.

I have it and find that it is exacerbated by alcohol in products so using the Body Shop Aloe Vera range has helped a lot, as has Green People and Faith in Nature stuff. Giving up drinking alcohol also had a postive effect on it.

My DH also has it and it affects his eyes. He washes his eye lids and eyebrows twice a day in warm water with baby shampoo, as recommended by the eye consultant .This is really effective along with lubricating eye drops.

I found that it really was a matter of trial and error as to what made it worse/better but it has improved immensely so don't give up hope . You wouldn't know that either of us has got it now ...got a huge conk but have always had that ;)

Thankyou - does your dh find his eyes feel okay during the day? I am finding this really hard, and any internet 'support' sites seem to be about people giving up work and being almost suicidal. I have this gel, but not sure how I use facial sun screen and make up with it? On top!? Underr?? Etc.

Sometimes his eyes flare up and can be very painful but they have been so much better with the baby shampoo routine.

For me , nothing that a gp or dermatologist gave me made a long term difference; it really was down to me trying different products to see what happened. For me Head and Shoulders shampoo made my face burn , for DH if he stops using it his eyebrows get scurfy and his eyes become sore. My friend who also has it swears by Simple products but for me they were dreadful. For a long time I had a raw area around my nose and mouth like a dog's muzzle; which only went when I stopped using anything with alcohol, parabens and sulphates. I

I wear Body Shop aloe vera moisturizer with spf 15 and Clinique foundation on top without any problems. I don't use a proper sunscreen on it on holiday as the zinc in it makes it itchy although I have used Green People sunscreen before.

Perhaps you could look at what you use and do a bit of testing to see what makes it worse/better? I do understand that feeling of despair- I really thought that my face would be shit forever but it's not and as time has gone by I can use more and more things that were previously irritating my skin.

God your last sentence is me, right now. Happy to use the boddy shop stuff, last question - do you not have anything 'prescribed'? Only because I found dire warnings on some american site that one needed to seek medical attention immediately. Or risk permenent disfigurement. I shall try to stick to nhs direct...
Thank you so much btw, really useful to speak to normal person with it and not someone specifically on a support site.

I had it very badly for about 7 years and I looked at those web sites too. The huge noses were a worry, but rosacea is common, how many people have you seen who actually look like that?

I was a terrible state and I'm am fine now - I only get flushing when I drink wine or get stressed. Nose normal. Not all doom & gloom at all so don't give up looking for what works for you.

I tried everything there was, I even gave up sugar for a year. What worked for me in the end was trying different types of antibiotics until one cleared up the symptoms (sorry, can't remember which). I also use the Clinique moisturiser for redness (don't, whatever you do, use their 3 step skin stuff - terrible for rosacea) and sun screen. Dead sea mud soap (about £3 from Boots) worked very well for me too. Quite a revelation after I had spent a fortune on quack cures from the internet.

Don't panic OP. It is horrible, but despite what those websites say it is curable. I remember the horror of reading that it was a chronic condition and would only get worse. Nothing of the sort, I have great skin now & eyes are fine. I appreciate my skin every day.
Please go back to the GP, the gel is rubbish. Makes it worse if anything.

I think I got the right medication because I got a different GP who had more knowledge - might be an idea. I took antibiotics for a long time & lost some hair as a side effect. Hair grew back and my skin stayed normal when I stopped taking the medication.

The only things that work for me is a low dose of antibiotics daily as a maintenance thing rather than a cure (I've never been able to cure mine). I do find it's worse when it's cold (v flaky, but sun seems to make it better). A thick moisturiser with SPF in it (try lush British Nanny), managing stress and doing enough exercise also seems to help. Mine is more a second stage type with redness on top of which I can get massive painful spots. It's a dire pain in the proverbial so you have all my sympathies!

Notactuallyme as you can see from the replies everyone is affected differently and has found different ways of managing it. I have taken long term tertracycline antibiotics in the past but the best response has always been moderate to what I put on it.

Please try not to worry about it. Look at what you are currently using for face care and hair care and see whether swapping them might be good. Perhaps give the gel from the gp a try and if that's no good then go back and see a youngish one if you can & perhaps get a dermatology referral . Don't read any more american websites; their care is very medicalized and consequently will not match what you can expect here in the UK .

I can't tell you how much I really aappreciate the replies. I am going to print this thread off and read itt more carefully. My gp has agreed to refer me in a month (we have bupa, luckily) if it doesn't improve. I'm not sure about the gel. However, I'm also a bit concerned about taking antibiotics for a really long time. I am going to look again at my face stuff.
Whoever said about internet quack cures - I'll stop looking now!

Another point I forgot to mention is that instead of the gel (I thnk it was called Metrogel) as for the cream (rosex) as it's much nicer to use. I also found my skin become noticeably better when I switched to soya milk (but that may have been coincidental)

I don't have this condition but a friend does (which is why I am lurking) but just wanted to add that Body Shop aloe vera moisturiser is the ONLY product I am aware of which does not flare up my ultra sensitive skin, so I do urge you to try it.

Panic not minty I am planning a shopping trip this week! I think I am stuck with the gel for a few weeks.

About the same time as getting rosacea I also acquired hayfever. I don't think they are linked other than in the whole histamine response thing- in that my body was reacting sensitively to chemicals and then another histamine stimulating thing (pollen) was added into the mix. I started taking daily Loratadine anti-histamines to calm the whole response thing down and control my hayfever with the beneficial side effect that it also calmed the irritation in my face.

That happened to me too gypsyfloss. I hadn't made the connection between hayfever and rosacea before, but it is a bit of a coincidence.

Rosacea is not really understood so most ideas about causes and outcomes, especially the scary ones, are only theories. There's one about it being caused by an infection of mites, there's a website about a man who was burning off layers of skin to try and get rid of the theoretical mites. I was so desperate I even considered it.

Hi, I had it at university for about a year. Treated with metrogel, worked within a few weeks and haven't had it since. Am certainly not permanently disfigured! Also a cousin had it quite badly, he's also had it successfully treated and you would never know now. Hope it is so straightforward for you!

My roseacea calmed down a lot with treatment - first metrogel but that really isn't compatible with sunscreens and makeup so then rosex - that worked for a while then didn't seem to so switched to finacea gel (which isn't really a gel and can put other stuff over).

I've had a flare-up in the last few months, back on the finacea but not sure its working yet - suspect part of it may be hormonal changes (I'm 51) - can't tell if the flushing instances are the old thing or the onset of 'hot flushes'. Going to GP to discuss tomorrow, will let you know if anything interesting transpires.

I have it. Have antibiotics from the GP but TTC at mo so can't take them. Changing my face wash made a huge difference to me - it's not completely gone but it's under control while I can't take medication. Try a facial oil instead of a face wash or soap (I use one from boots called nip and fab, it's £9 a bottle but you need a tiny bit bit each time, last a good 2/3 months and I use morning and night.) Less alcohol also helps me a lot.

I have also - through trial and error - found that bobbi brown corrector covers it very well. Foundation too heavy, tinted moisturiser not enough, concealer goes flaky.

Good luck! Hopefully it's not all doom and gloom. I have it mainly on my nose, am terrified at the thickened nose pictures!

You have clearly caught on to your symptoms early which is great. That way you can take action and stop any redness becoming permanent.

I didn't so am suffering permanent redness on cheeks chin neck and chest.

Rosex and metro gel didn't do a lot for me. Initially 7 months of erythromycin cleared it but it came back and I was pregnant and by the time I was done with pregnancy and bfing the redness was here to stay.

The very best thing I have tried and still use is Finacea on prescription. It takes the sting and redness down a lot and any rough scaliness goes too. I really recommend it

I too avoid all products with parabens and sls as that gives me an immediate reaction. Propylene glycol which is in practically everything is a massive problem too

I have discovered some very pure products made by a company called Akamuti - thanks to S&B on MN- that their products are completely free of anything chemical and their soap is Castile ie saponified oils (olive Shea butter etc) and their stuff makes my face happy

Aspirin face mask but don't use dissolvable aspirin, crush the ordinary kind as dispirin contains a couple of extra additives which can sting. That takes down inflammation and really helps redness. I do that a couple of times a week.

I find the Green people baby sunscreen the best. Only one which doesn't irritate.

I cannot use liquid foundation sadly and most mineral make ups are out too. I can use lily lolo ok. But if I am having a very bad flare up, I don't use brush or flocked sponge to apply as its sore. I then pour out some of the mineral powder and add a tiny few drops of water and apply that like a liquid to my face. It gives a nice finish too.

I have never drunk alcohol so can't comment on whether it helps to give that up. I have been making an effort to lose post baby weight (2nd dc) and been on a low carb diet and cut out sugar and white carb and that has been surprisingly helpful and kept flare ups away and redness the lowest it's been for several years

Btw I don't get spots or pustules I just get redness which has spread beyond my face to my upper body.

I won't lie and say it doesn't get to me because it can do. I am learning to deal with it and every time I find something which helps, its a small victory which helps my confidence.

If it helps, I think mine is very bad and noticeable but the reality is most people don't notice. I recently confided in a very good friend who was amazed and said I always looked so flawless. Perhaps she was being kind but she looked genuinely surprised.

Rather than get down about it, look for new things to help keep it at bay. That's the key to avoid the sort of depression you see mentioned on the various rosacea forums.

Fwiw. The thickend skin and large noses mostly happens to men and I have been assured by two different dermatologists that neither had seen a woman with thickened skin or bulbous nose.

Just come back to this, and doing crowd control with the 4 dcs and bedtime. Apologies for not thankong people individually. Might ring the gp aand ask if I can change to a cream.

Thank you all so much so far - I feel a lot more 'up' - also the hayfever thing - me too, nose gone really for the first time this year. Started antihistamine recently.
Will definitely take another look at my makeeup - haven't worn any for the last two weeks.

Thank you for starting this thread OP. I have suspected for quite some time that I have rosacea.

My skin is not too bad at the moment but that might be because I have been using the Dead Sea Mud soap mentioned by Procrastinating. I've used it for about 2 years and, although I didn't use it specifically for rosacea, I knew it suited my very sensitive skin and have always recommended it to others.

The problem I have is my eyes. I wear extended wear contact lenses and I am currently really suffering and have to wear my glasses. I am wondering whether there is a link with hayfever because I remember suffering about this time last year. I think I will try antihistamines and see if they calm down.

I also used to bathe my eyes with baby shampoo last year and that seemed to work. It looks like I need another trip down the baby aisle in the supermarket!

The other thing I noticed was that when my rosacea was bad I was also having recurrent thrush symptoms that needed prolonged treatment . So I lurched from ab's for my face to antifungals for my thrush and back again. Once I switched to paraben & silicone free shampoo my thrush symptoms completely went . Obviously I wasn't washing my fanjo in shampoo but it must have been getting onto me whilst I showered and irritating the area. All the symptoms I had mimicked what was happening on my face and in my hair but it didn't even occur to me that the shampoo could be the cause.

Like others have said, it is worth trying different medications. I started out on Metrogel which I only used at night as it wasn't suitable under make up (sort of dried and peeled off) but I found this was enough for the level of inflammation I had at the time.

When that stopped being effective I swapped to an antibiotic (can't remember name now). This wasn't as effective as the Metrogel had been in the early days. They sort of kept the worst at bay but it was still visible and needed careful choice of creams and make up.

Then I was given a prescription of oxytetracycline (sp?) tablets. It cleared up completely and has so far never returned (several years).