Announcement

Collapse
No announcement yet.

My first post here - does this sound familiar?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • PeteJ
    replied
    Hi Christopher, I see you're from the UK. I'm sure you know this but just in case it's helpful...

    Although it might depend on where you live, I don't think you'll be able to get Soolantra on the NHS. I had to buy mine from an online pharmacy –*was pretty expensive, but I must say it's the best thing I've used so far (though I am also on 50mg Doxycycline so that might be contributing or even doing all the work). I've had no irritation from it and all of last week, up until yesterday, I thought I was cured. My skin was basically back to normal. Unfortuantely, after a hot and boozy weekend, it has come back a little today. Still much, much, better than it has been and wouldn't be surprised if I was back to pale and symptom-free in a day or two.

    Leave a comment:


  • Christopher
    replied
    To maria st (apologies if that is incorrect)

    Thank you for the sound advice I will see if I can get hold of soolantra cream and give it a try?
    Best wishes
    Christopher.

    Leave a comment:


  • BraceYourself
    replied
    Eyes

    Out of interest do you find your eyes have poor perception in low light conditions when flaring?

    Not directly at least. Once again, I find that during flare-ups my eyes will occasionally start to tear. My sight stays fine though but I admit that I worry too much about the flare/redness more and thus I don't think about my eyes. Next time I'll see if I sense a difference.

    All the best

    Leave a comment:


  • MariaSt
    replied
    Hi! It's fortunate that oral ivermectin worked for you, I tried it too, but without success. The Fucibet cream contains fucidic acid (an antibiotic) and betamethasone (corticoid). Avoid using it, it the corticoid will make your condition worse in the long run. Your next step, based on how the oral ivermectin helped you, should be cream Soolantra, it's topical ivermectin.
    Rosacea should be treated only by dermatologists, not GPs, it's a very tricky condition. Even dermatologists find it hard to treat.

    Leave a comment:


  • Christopher
    replied
    Hope this is of some use!!

    I first registered with this forum about 9 months ago and read as much of the information I could digest over a period of a few weeks and as I had tried most of the suggestions there was one that I definitely hadn't tried! Enter my first encounter with a little mite called DEMODEX!!
    My GP had been treating me for Rosacea for about 12 years without any success, more red faces and rashes with each cream I was prescribed and along with itchy eyes and flaky dry skin. Things got even worse on awaking in the morning my eyes would water and the tears from my eyes were like acid on my skin and burnt.
    Cut a long story short I felt I had nothing to lose and read up on Demodex mites and the cure. As it was simple decided to try it and went on line and ordered some IVERMECTIN tablets from a company in Canada. I followed the instructions and hey presto my eyes stopped stinging and my skin started to clear up!! I still have the occasional rash that feel like pustules under the skin but not visible just that I can feel them and apply a cream called Fucibet which clears it up over night.
    This for me has been liberating, as I no longer feel embarrassed about my complexion. I am 68 and have been cursed by Rosacea for a good many years, but no longer. I think a lot of the time there are mites that have not even been discovered yet that can live on the skin undetected that get diagnosed as rosacea, quite simply because they just don't know.
    I hope this helps anyone who has been cursed with this problem, this is only my experience and it is what worked for me but please remember we are all affected in different ways but you have nothing to lose by using IVERMECTIN. It can't be prescribed over here it has got to be passed by pharmaceutical laws which hold it up for years! It cost me £12 to be free.
    Hope this helps.
    Best wishes to all sufferers
    Chris.
    Last edited by Christopher; 11 July 2016, 06:09 PM. Reason: Dates incorrect! Member since 2005

    Leave a comment:


  • PeteJ
    replied
    Hi BY, I am also quite sensitive to the light, particularly when my face is flaring. But always have been since childhood - many childhood photos have me squinting in the sun! Although i haven't had enough sun exposure this summer to be sure, I suspect my rosacea will be one that's sensitive to the sun as my pale skin has always been quick to burn.

    I have noticed that getting even the slightest amount of any topical in my eyes will make them sticky and sleepy for the rest of the day. I've had red and swollen eyelids for years and years, though in terms of red blood vessels in my eyes, these have been a bit more visible this last 6 months but have gone down to normal since my worst flare settled.

    I don't wear lenses and find my eyes are a constant red throughout the day, though my face tends to be at its best in the morning.

    Out of interest do you find your eyes have poor perception in low light conditions when flaring? That was an obvious issue for me when I had my worst flare, but the optician said my eyes looked healthy, apart from the blepharitis..

    I'm still confused by my triggers. Sometimes alcohol causes a flare, sometimes it doesn't. Same with coffee. Always avoided spicy food so no problem there. I think humidity is a bad one, perhaps worse in combination with other things. Exercise or overheating from exertion - even housework - are among most significant triggers. Winter cold and biting wind were very bad, but I wasn't so aware of how to look after my skin during the winter - hoping this year won't be so problematic. Sun: the jury's still out! I will let you know how it goes this summer.

    Hope your eyes calm down for you.

    Thanks
    Pete
    Last edited by PeteJ; 10 July 2016, 04:57 PM.

    Leave a comment:


  • BraceYourself
    replied
    Hey Pete,
    you said that your eyes are sensitive towards light etc. But does the sun effect your redness at all? Loads of ppl here are saying that they get 'flare-ups' when they go out in the sun. I also have very sensitive eyes from the glare off white walls/materials for example but the sun itself is kinda harmless for me. I don't understand why I seem to be the only one who doesn't need sunscreen/suncream whenever I'm out. Perhaps it is due to the fact that my face looks like a piece of crap anyway but I don't get flare ups because of that.

    However another factor I have is that I wear contact lenses. Thus perhaps my Soolantra gets into my eyes, gets trapped inbetween and that's why I tear up. I hope it's not dangerous...

    btw are your eyes red in the morning or at the end of the day? What about cold/windy weather? Perhaps you could see an Ophthalmologist (eye care) instead of just using Dermotologsts. Mine said it could be conjunctivitis which ain't something you need to worry about if it's true.

    I hope I've found someone to relate with.

    Leave a comment:


  • PeteJ
    replied
    Thanks for your reply. I've read about this cream and it sounds interesting. I've found it online at Amazon so if the Soolantra doesn't work then I'll definitely look into that.

    So far I have been recovering well from the Ketconazole disaster. I look back to my mild baseline red and the darker red patches have practically cleared up. Just a bit left on my forehead and temples (where it is still burning a bit) and the odd patch on my cheek. I did a short yoga class today (though did have a fan pointing at me to stop me overheating) which has irritated my face a little as it always does. That should go down over the next day or so.

    So far seem to be tolerating the 50mg Doxycycline better than the 100mg. Had a bit of rebound full face burning on Monday, I guess from stopping the Rosex in favour of Soolantra. I stopped Rosex on Saturday and didn't take the Doxy until Monday. That has since gone down a lot.

    First impression is that Soolantra is doing nothing bad and nothing good, but very early days. I guess it also depends on what I expect to be the result.

    I am resigned to the fact that this won't go away so it's just about making it manageable. My NHS dermotologist suggested that it may never come back, which I know is complete cr*p. Especially as it came back within a week or so of seeing him! It would be nice to think it would go into some kind of long-term (or even permanent) remission/hibernation, but I can't see that happening, and everything I've read here seems to suggest that's not going to be the case.

    I would love to hear opinions on this. I've read that it can go into hibernation, but not sure I beleive it. You suggest yours went away for a while. Is that right? Did it actually disappear or did it simply not flare up as badly?

    Thanks
    Pete

    Leave a comment:


  • Violetta62
    replied
    I don't think that this is the same as my Rosacea but this is my story and the cream I've been using is supposed to be for Rosacea, so I think it could help you too. I posted this on another thread but want everyone to see it.

    I had what I known to have been Rosacea in my early twenties and I tried everything, I was so desperate that I even tried a special Irish water and some powder.... obviously it didn't work.

    I'm now 53 and about 4 months ago it came back, I kept trying different things but it just got worse. It's on my cheeks, the bone below my eyes and a little on my forehead and I felt really embarrassed because everybody was asking what had happened to my face. Of course I didn't want to go out, and at that time I still didn't know what it was.

    So I searched on the internet and found out it was Acne Rosacea and started searching for something to help it. Eventually I found out about a Chinese doctor, I can't find the story now, but he was a doctor in the Chinese army in the 50's, I think. Anyway, he had a friend who had this terrible problem, it's supposed to be caused by a mite called Demodex and he came up with a cream which cured it. I ordered some of this cream and have now been using it for 2 weeks (today), apparently it takes between 90 and 120 days to cure it, depending on the type of Demodex you have, this is to make sure the Demodex are dead. It really has gone down a lot, it's now pink instead of red, the spots have gone and I only seem to get a tiny bit of itching when I've used some moisturiser because of the dryness. It does tingle quite strongly when you put it on and it does make the skin very dry, but there are no harmful chemicals in it and I really think it's worth it.

    They also have an eye cream.

    I'm not trying to sell anything and I have no associations with this doctor/company, but I do know how awful this problem is and I wish I had known this when I had it the first time, for 3 years!!!

    You can find it by typing Demodex Solutions in Google, I'm using the Zhongzhou ointment and the Acarid soap. This morning I've been looking at their moisturiser because of the dryness, they say you can use the Zhongzhou at night and the other cream (I think it's more moisturising) during the day, so I'm going to try that now.

    From what I've found out about this, it does have a lot to do with stress and what's going on in the gut. I think that getting more good sleep, eating a good diet and less stress does help, I've been working on all of these things at the same time and I feel much better.

    I did take a photo of my skin before, it's awful but I will share privately if you email me and I'm intending to do another photo today to show the difference.

    Good luck to all of you.
    Violetta
    Last edited by Violetta62; 4 July 2016, 09:03 AM.

    Leave a comment:


  • PeteJ
    replied
    Sudden patch on my eyelid!

    Hi again, sorry to write again so quickly.

    Since I posted my story last night I noticed one of the red patches (like in the photos) on my right eyelid, for the first time. Today it is getting dry skin on it.

    I can feel it getting a bit uncomfortable. Does anyone have any idea of what I could do to help it?

    Wish I hadn't put the ketaconazole on my face. It's gone pretty bad ever since.

    Going to be starting 50mg Doxycycline today so hopefully that might help in the medium term, but any short term advice would be gratefully received!

    Thanks

    Leave a comment:


  • PeteJ
    started a topic My first post here - does this sound familiar?

    My first post here - does this sound familiar?

    Hello everyone, I've been following this forum avidly for 6 months since my "rosacea" started. Thanks for all the advice! Like many here, I don't really have a proper diagnosis and would love to read some opinions.

    Background
    I'm male, 39, based in London, UK. Classic fair skinned northern European. Vegetarian for 15 years.

    I guess it started while on holiday in Australia last April. I went to a tropical island (very hot and humid) and within a few hours of being there felt like I'd been sunburnt on my face – despite wearing sun screen and a baseball cap. It went red, a bit lumpy, stingy and sore. My friends thought it was prickly heat. I thought it was blocked sweat glands, an allergic reaction to the sunscreen (though hadn't had that reaction before) or the very chlorine-y water. It mainly affected my temples (most sore there), forhead and cheeks.

    As soon as we got back to Sydney, it started getting better. I had been using kid's sun cream and a Nivea moisturiser, because it started going flaky. It went within 3-4 days. Though a slight base redness remained ever since, epecially on my temples. Thought nothing of it again, just assumed tropical islands weren't for me!

    Then........

    December
    It was cold and very windy in London, it was Christmas time and I was out drinking often. I was also stressed.

    I started noticing some strange symptoms:
    • My eyes were itchy, eyelids red
    • Face red after a shower (except around eyes)
    • burning on the skin to the outer sides of eyes (but no obvious rash)
    • eyes were sore and light sensitive


    I was a light smoker then and I think it was causing the burning sensation, so I pretty much stopped smoking after 20-25 years. Hooray!

    January
    Optician diagnosed mild blepharitis. I now do warm compresses regularly.

    During winter my face felt sunburnt, particularly on my temples. Skin went very dry and flaky, particularly on forehead. Didn't really look like the Australia episode as skin wasn't raised and didn't sting so much.

    February
    I had a smoke (silly me). Immediate hot flush – burning face and ears, tingling etc. First of many hot flushes.

    Saw private dermotologist nurse – she thought it looked like Rosacea and story fitted.

    She gave me a great cleanser (still using) and barrier cream, 100mg Doxycycline and Skinoren (azelaic acid) once a day. Couldn't tolerate Doxy (I have probelms with constipation and these made it worse - opposite side effect to most people). GP substitued with Lymecycline, but same side effects so stopped. Skinoren painful 15-30 mins after application but just about tolerable.

    At this point I was seeing an NHS dermotologist for possible inverse psoriasis and told him that I'd been having some flushing and he gave me Rosex gel to try twice a day and would re-asses in 3 months.

    Symptoms came and went. Hot flushes, burning, dry skin, eyes got really bad – difficult to keep open and it spread to my neck (felt like hives on my neck). Skinoren got more painful to use so stopped. Carried on with Rosex. I started getting the odd pimple on/around the nose and under eyebrows. Not many, but sore. Deep under the skin.

    March
    I bought a LED amber & red light device – have been using ever since. I think it's helped.

    Started using 50spf mineral sun screen dialy.

    April
    By this point I was eating sensibly, avoided to many sugary foods, had cut down to minimal alcohol and no smoking. Was getting more sleep and was less stressed.

    A few days after a weekend music festival – where I was quite sensible, but not innocent(!) – my skin suddenly felt smooth, the dryness went and redness subsided to post-Australia levels almost overnight. Flushing gone, barely any burning or eye problems for 4-5 weeks. Triggers not triggering. Couldn't flush if I tried!

    I guessed it was because the sun had started to come out, temperatures warmed, and/or the Rosex kicked in.

    May
    Got two sinusy colds back-to-back for about a month, and it started coming back. I hadn't changed anything diet or lifestyle-wise from the remission period.

    Managed to get it back to April levels quite quickly.

    Went back to NHS Dermatologist for follow up. At this point my skin looked good. He said he could barely see it, bar a bit of flaking. He thought it could be Seb Derm. I said, "do you get flushing and pimples with seb derm?". He said "Mmm, not really". He then looked closer at my face and said "yes maybe I can see some rosacea".

    He wrote to my GP telling them prescribe Ivermectin and 40ml Doxy (Orecea) if it came back. I was happy, I'd read a lot of good things about Soolantra.

    June
    It came back. Went to GP. They told me they couldn't prescribe Ivermectin and Oracea as they're not licensed by my NHS Trust (ie. too expensive). Can only prescribe Azelaic Acid (ouch), Doxy or Rosex. I've ordered some Soolantra privately and GP is giving me 50mg Doxy. So will try this next.

    My recent episodes have been more like in Australia – flush causing sore stinging skin, patchy redness. Seems to start as small flat red dots after a flush which dissipate over a few hours. It has been humid here. Here are some photos of my neck, cheek and forehead (it can look a little worse than this) .

    neck.jpgCheek.jpgforehead.jpg

    I tried a topical antifungal (miconazole) and Nizarol on dermatologist's/GP's advice. Both with successful test patch, both went very red when on full face, then dry/flaky the next day.

    My general feeling from what I've read is I have subtype 1, but have had a few episodes where I get a spots.

    I seem to go through this cycle:
    • Minor burning
    • Hot flushes
    • Moderate burning
    • Very dry skin
    • Oily nose and cheeks
    • Get a spot or two
    • Calms down


    I would love to get some thoughts on this. I'm pretty sure I have Rosacea due to the flushing, but not sure if also seb derm or something else. This was all very sudden and out of the blue. Though have always been a bit prone to a hot flush if it was very warm/humid, and have had dry skin issues every now and then.

    Thanks for reading, I appreciate it's a very long post!
    Last edited by PeteJ; 30 June 2016, 07:57 PM. Reason: Would love some opinions
Working...
X