I do not drink alcohol, no caffeine, little red meat, eat lots of fruits and vegs, exercise by walking 4 x’s a week, and try to wear a hat when out in the sun. Oral drugs is Oreca 940 mgs), doxacycline (100mg), minacycline (50mg’s). Oreca works for about 6 hours, same with doxacycline and minacycline about 2 hours. Never mix these. When I have a bad flush, I do sometimes take 50-100 mg’s of minicycline.

Heat over 75 and direct sun and my face will either flush or turn red. A gradual redding. Yes, I need help. Any suggestions…………

I finally realized I was going to have to wing this one by myself. Tried all the various products out there. No lasting success w/any of them.

The following are some of my random observations. I do not think rosacea and demodex mites necessarily always are concomitant.

I think the demodex mites are opportunists who take permission from the body when another part of the support system is under extensive stress . . . when the approved helper cells are called in, the demodex also respond. I believe that because each of us has a complex, ever changing chemical system, some of us will respond to dis-ease differently, hence some of us are plagued with mites and gum disease, others respond to the “flight or fight” signals much differently.

I firmly believe in the concept of “mind, body, spirit.” They are all intertwined. I do know that at the Duke Medical School, the mantra is beginning to be pushed that it is easier and cheaper to keep patients healthy . . . rather than wait until they are very sick and need much more extensive and expensive care.

This very old concept is beginning to catch on with the
ever proud and stubborn M.D. gang.

I think that demodex mites invade many other parts of the body and are just as fond of mucus as they are oil . . . and will eventually be regarded as a red flag for many other serious conditions . . . And possibly be considered pathogenic in their own right under optimum circumstances.

As far as bringing them back to their rightful numbers, I think it necessary to look at them as the symptom rather than the illness. Diet plays a huge part. Dumping sugar, carbohydrates, meat, and dairy helps immensely! After a couple of weeks, the body organs are not required to work so hard to compensate for another organ that is under siege from a lousy diet.

This is just my own ignorant opinion . . . only based on observation . . . but I do not believe demodex mites have ever been considered or properly tested for other, seemingly unrelated conditions. There has simply been no interest or knowledge. This is probably why biochemists are going to be the next medical “rock stars”

Well I suppose we should be grateful that rosacea is treatable and as you say for many with milder cases, then they are able to keep it under control and the condition is no more than just an occasional nuisance. I agree that for the more severe cases, then they do need help and encouragement together with the best advice from those professionals who care and are prepared to work with their patient to find the most suitable treatment.

There isn’t a “natural interval” as such for this condition as it can vary so much to the individual but there is evidence out there of success stories and people who have gone into remission. I hope Powell has had patients where this has happened and included this in his book? I will leave you with a message someone sent me last year:

“Peter,

Just a note to thank-you. Two years ago I was diagnosed with rosacea and was having a very hard time. I contacted you and you reassured me that the condition can be controlled and gave me hope that eventually remission could be a possibility.
Since that time, I have found reference after reference of the disease eventually lessening. I started a file of these references. When my skin is out of control, I read and re-read these references and it helps me to not get so down about the condition of my face.
I just wanted to thank-you for ‘planting the seed’ that rosacea, in some cases, can be self limiting. If one chooses to search, there are many people (including the National Rosacea Society) that claim that the disease eventually can fade.
I know that it is not the general feeling of many on the message boards, but I prefer to think of rosacea as something that can go away, rather than a progressive, incurable condition.
Thank-you for opening my eyes to other, more positive possibilities.”

I would hope that sufferers can have faith in the proven outcomes for accepted treatments rather than faith in some kind of statistical average of duration of symptoms.

Indeed it does seem that the mainstay of rosacea treatments do offer pretty good relief for the majority of sufferers. Those outside this group, however are the ones that really need to encouragement and resources of experts.

davidp.

I suppose I really need to get hold of the book and read it in its entirety. Personally I still think the “demodex” could turn out to be a dead end but I hope I’m wrong given the amount of NRS money and time that has been thrown at it over the years.

Well I am very surprised by his comments regarding Clonidine because I thought it was recognised by most of the top dermatologists as being excellent at controlling the flushing associated with rosacea. My dermatologist was a big fan of this drug and under his guidance I took it for 4 years with superb results. He regularly prescribed Moxonodine as another option for those where Clonidine doesn’t suit and I wouldn’t describe it as experimental. I’m not sure whether it’s still the case but none of the vascular drugs are licensed for rosacea and this really is anomalous given that it is recognised that the primary abnormality in rosacea is vascular. Treating rosacea can often be a matter of trial of error until you settle on something that works but a good dermatologist will be prepared to think outside the box for those who do not respond to standard treatments.

The influence of anti-malarials e.g. Mepacrine with rosacea has been known for years in some circles but they are not first line treatments and therefore some dermatologists may not have experience using them. Given that Powell is supposedly an expert then I am very surprised he hasn’t included them in his book.

Sorry but I disagree with your comment on remission. I was told straight away that providing I received treatment then there was every chance that my rosacea would go away, although there was no way of predicting exactly when. This gave me hope and encouraged me to persevere with my treatment and made me confident that I wouldn’t finish up disfigured which is what many sufferers fear. I think it’s important that a patient is made aware that a diagnosis of rosacea isn’t the end of the world and that spontaneous remission is much more common then many think.

Regards

Peter

Powell is careful to say that off-label treatments like clonidine may be useful but are not officially recognised. I would think that moxonidine is even more experimental as it is lesser known compared to clonidine.

Anti-malarials are not talked about and again this is not too surprising as treatments on the fringe of normal clinical experience will take a while to become accepted/approved/recommended. I was actually surprised to see so many off-label treatments mentioned – you won’t find official medical channels even saying their names.

Just my own comment on the remission/average duration idea. I have always thought that the whole argument was of limited valued because it didn’t help sufferers to understand much about the disease. Symptoms vary so much that making generalisations seems to end nowhere. If I was just diagnosed, I would hate to think there is nothing I can do to avoid a 10 year wait Having said that, I probably had it for around that long !

davidp.

As David mentioned in his review there is a link on the Amazon site where you can search the whole book on-line for key words, so I decided to give it a try.

I entered “Mepacrine” and there were zero results – that’s a shame because if this book is primarily aimed at physicians etc, then it would be important for them to be aware of this drug and its use in stubborn cases of rosacea or those where the first line treatments are not successful. Maybe Powell doesn’t prescribe this drug himself to his patients but he must be aware of it’s history and it should be included in every dermatologist’s tool box?

A similar search for “anti-malarial” also revealed zero, as did “Moxonidine” and “Aloe Vera”.

As you know Moxonidine can be used as an alternative to Clonidine for helping with flushing and for some rosacea sufferers it can be more effective. Aloe Vera gel can be a very useful natural topical for the rosacea skin and can help with seborrheic dermatitis.

“Remission” revealed several results but I need to drill in a bit deeper to see the whole text, when I can get hold of the book.

If you still have the book maybe you can check my searches or I’ll wait for David to return next week?

Briefly my comments are:

Rosacea can occur at any age and not solely confined to “middle age” although 30 – 55 is deemed to be the most common time frame when it can appear.

I still think too much time and money is wasted investigating the “demodex”.

I’m not convinced that UV light plays a major role in someone developing rosacea although it remains one of the common triggers.

Any book about rosacea and its treatments should really include the anti-malarial drug Mepacrine as an option for cases which are resistant to the first line treatments. I understand that it can have an ant-inflammatory action on rosacea which can be very effective at switching it off in some patients or unfortunately it just doesn’t work at all.

Regarding remission, my understanding is that rosacea is usually considered to be a self-limiting condition and eventually it will disappear, although there is no way currently of predicting when this will be. Some experts will give it an average lifespan of around 10 – 12 years but I have heard of people where it’s duration has been relatively short and others where it has been in evidence for several decades e.g. over 30 years. It’s important with rosacea to seek prompt treatment and therefore increase your chances of keeping your skin in good shape for when it does burn itself out. Information regarding “remission” in rosacea is around but harder to find because these people naturally tend to disappear and fall of the radar.

By the way David e mailed me to say he is currently on holiday but would reply to my comments next week.