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that's "break" not beak!

Hello again Beverly, I fully agree that we as LS sufferers are individuals and that we respond to different things in vastly different ways. So, for me, vaseline (white petroleum jelly) would be one of the worst things to apply. I do however think my situation came about because of many years of using things like skin creams and lotions, and even antiseptic cream(Germolene in my case) that I used to first of all treat Phimosis (I stretched my skin using the germolene), then in later years my skin became excessively irritated and simply would not heal. This turned out to be because of LS of course and I have been using Clobetasol basically every other day for the last 8 years to keep my skin as healthy as possible.

One cautionary note: using vaseline stops the natural breathing process that the skin needs to be as healthy as possible.

In terms of Dermovate and ClobaDerm and all other brand versions of Clobetasol must ONLY have a steroidal content of 0.05% - this will be an internationally recognised specification for the medication

Just to reiterate for other readers: any steroidal ointment or cream needs to be the correct strength to suit an individual's infected skin, it then needs to be applied sufficiently regularly enough to ALL infected skin areas, once skin has responded positively to initial application of the steroid (3 weeks plus I would suggest) the skin MUST be gently stretched on a regular basis, usually this is best done when applying the steroid.

Yes, of course, some people's individual circumstances will mean that they may well have an intolerance to steroidal ointments or creams - but most often this will be a case of finding the correct strength to suit an individual. The process of finding the correct strength should be with a Health Specialist such as a Vulval Skin Disorders specialist, or a Dermatologist with sufficient knowledge of genital Skin Disorders. Thankfully, many Gynaecology Departments are now offering this specialist service as unfortunately the majority of sufferer's of Lichen based disorders are women.

My steroid ointment is .1% (I left out the decimal and wrote 1% in that previous post. Math is not and will never be my thing). It was prescribed by a vulval specialist but is not one of the brands you mention. It is Triamcinolone which is weaker than clobetasol. My gyn may prescribe the clob for other patients but in my case she said she believes it is better to start with a milder steroid rather than go directly for the biggest guns. She also recommended vaseline for it's neutral PH qualities , but it was in regards to soreness from estrogen cream which is obviously something you aren't dealing with. But I would think it she felt it was bad to use re the LS she would have said so.

I am seeing her tomorrow, sadly for the last time. She is leaving the medical group, so we are going backwards in that skin disorder department. If I think of it I was ask her opinion on vaseline and LS. I've always understood it to work well as a barrier for any skin irritation. As I will fell it's my last chance to ask questions I'm afraid I may overwhelm her!

So what you actually have is an ointment with twice the steroidal strength of Clobetasol, as that is what twice 0.05% is at 0.1%. I understand your misunderstanding of this - all I am trying to do is to correct false claims that Clobetasol is a strong steroid, as this can mislead other LS sufferers in wanting to stay clear of using it.

I hope you gained great great benefit with your meeting with the medical practitioner you have been seeing as this seems to have been very positive for you ....

Wee, I did get to see her and was thrilled to hear that she is leaving the group but start her own practice at the same location. If that doesn't happen she informed me there is an actual vulvo/vaginal disorders clinic... not close by within driving distance which certainly relieves my anxiety.

Re the steroids, my GP clearly explained that Clobetasol is the strongest, Triamcinolone is less potent and over the counter the weakest. This is exactly what the gyn said, so I'm not sure where you're getting your info from.

Just got this off a medical site:

Clobetasol is a potent steroid, triamcinolone 0.1% is midstrength, and desonide is lower-potency. Clobetasol and triamcinolone 0.1% are generally utilized for skin disease on the body, whereas desonide is the appropriate choice for skin disorders on the face, groin, axillae, and breasts

Maybe the confusion is that UK and the US have different measures of steroids.

I don't know.

Re my poor typing, my gyn is "hoping to start" her own practice.

Beverly, great news about your practitioner (potentially) and the nearby specialist facility. Thanks for the details from your GP and the medical web site on steroid strength - as far as I am aware these have to be international standards as much of this type of medication is sourced from different counties, and then medical practitioners using these will be in a range of different counties too.

So, my information comes from basic mathematics, 0.05% is half that of of 0.1% - but perhaps there is something else going on. Need a Dermatologist to explain what is going on with regard to different strengths ...

I take it you are in the US rather than the UK where I am? Just you say GP, which is a UK term for Regular / Family / Primary Care Doctor ..... ?

Wee Dugie--there are 7 classifications/potencies of steroids and clobesterol is in the most potent classification. The steroid Beverly is using is in a moderate classification. The percentage associated with each steroid does not indicate it's potency, that is defined by which class it is in. This is a worldwide classification. The names of the classifications may be different in various parts of the world but the potency list is the same. If interested you can do an internet search on classes of steroids.

Yes, I'm in the US where GP means general practitioner or primary care as opposed to a specialist. Many health insurance companies require we see a GP who will then refer out to a specialist if needed. But on my plan certain specialists like a gynecologist don't require a referral .

One thing I didn't mention is that I have unfortunately now graduated to clobetasol . Clearly I have the stealth version of LS. No agonizing symptoms or itching, but had developed a mild buzzing feeling which another poster told me was a symptom of active disease. When I saw the gyn in the fall she said there was no sign of it where I had that sensation, but she said otherwise 5 days ago. Obviously I am not happy about this progression.

Dietary changes have had no effect at all. Same for supplements although I have recently read of others being recommended for AI specifically. I hope to see a functional medicine doctor now that I am back home. My gyn thinks it's a great idea, but I have to check costs. The one I found in FL charged $800 for the 1st appointment and accepted no insurance for anything including tests. Not happy about that either.

Once again my response is being moderated. This is getting tiresome. There is nothing new or unusual in it.

Many thanks for the explanation - I was simply working on the percentage content of each of the different steroidal applications! I now understand this is too simplistic and will try to look more at the classifications as you suggest.

Hello again Beverly, the trigger for our messages to be moderated is very annoying - I can fully empathise with you on that - I have had it several times at the most inconvenient of times in the recent past. (Annoying!!!)

Anyway, thanks for the further detail on your personal LS journey, I am sorry you have had to step-up to the Clobetasol for relief of symptoms.

Obviously, I could ask lots of questions about what you have tried dietary wise, but we are both familiar with what others in these Forums have stated as essentials, such as excluding sugar and alcohol and all the mineral and vitamin supplements we need to take.

The only comment I would add is sometimes this change has to be radical and perhaps you have not found the right essentials for you, to either exclude, or the right essentials to include. I hope you find a way of resolving all of this ..... !

Ohh, and I even understand a bit more about the steroids and the need to look at classifications of them, rather than simply going on percentage strengths - so you were right to correct me on that.