Is it possible I am allergic to the clob?
Posted , 4 users are following.
It has been 2.5 years since my diagnosis of LS and I was told to use Clob twice a day for flare ups until it goes away and two days a week twice a day for maintenance.
My dermatologist says this is all I can do.
It has literally never gone away.
I do the salt baths, coconut oil and emu oil.
I don’t wear panties.
I just came back from a long trip 2 days of flying which has seriously agitated it more.
I feel like I am allergic to the clob? Nothing seems to help.
Any suggestions?
0 likes, 6 replies
suzie37971 Alex1968
Posted
Hi Alex , so sorry that you are suffering . I am a year on and still the same . I also find that the clob agitates me more and so use a lot less than a pea amount and moisturise well before I add. I have found this creme , I live in Spain and I have tried to name it but it was removed by admin.
Initially it stings but stops quickly and helps with itching and stinging . I have now been using for two weeks .
skin is healthier although not symptom free its better than resorting to clob . I will pm you xx
beverly52803 Alex1968
Posted
You could try a less powerful steroid. I use Triamcinoline (can never remember the spelling). My doc starts with milder and works up to stronger if not successful. It has worked well for me. I have posted this many times so hopefully this post will not be blocked as Suzie's was. Very unfortunate that ANY med names are blocked as the purpose of the site is to share helpful info and that certainly involves med or product names.
Wee_Dugie Alex1968
Posted
Hi Alex, I am a Male who has been dealing with LS for almost 8 years now. For the vast majority of that time I have only been using Clobetasol - in the Brand names Dermovate and ClobaDerm - my preference is for the Dermovate Ointment as this seems much easier to work into my skin than the ClobaDerm. (See it is possible to mention Brand names and not have the Admin Gremlin censor or ban your post!!!) There is a great deal of sense in what Beverly has stated as a response to you ....
In the time I have been reading these Women's Health / LS Forum Posts this is what I would add:-
.
Clobetasol gets a bad name from people who it does not help and there can be many reasons for this: it is not the best steroid to suit their skin type and the severity of the infection (as Beverly rightly points out); indeed, many so-called 'diagnosis' of LS are merely medical professionals guessing the presence of LS if a confirmatory Biopsy has not proven the presence of the condition.
If LS is confirmed, suffers using Clobetasol may not be using it correctly - such as rubbing it in to all infected skin areas on a sufficiently regular basis. A mix of different things applied to infected skin may undo the beneficial impact of Clobetasol.
Please note, I am not blaming all Women using Clobetasol for not gaining the beneficial impact that it should be giving them. As you state Alex " My dermatologist says this is all I can do " - well, I don't think that is good enough - I wonder if the Dermatologist directed you on precisely how to apply the Clobetasol, to what skin locations, for example?
The role of a professional is to find the right treatment that suits your level of infection best, and if the initial treatment regime is not doing all it can to alleviate ALL the symptoms, they should be there for you to find the treatment regime that does work. This means trying different strengths of Steroid Ointments, that is for sure - but also taking a broader view on what else can also be beneficial for you.
As many Ladies in these Forums suggest, gaining access to a Genital or Vulval Skin Specialist is probably where you need to be looking for further Professional Medical help on finding the treatment regime that works for you.
And by the way, my one little tip to try would be this: stop using the Coconut and Emu Oils for 4 or 5 weeks and try this that was pointed out to me by Nancy KB: Get some Aloe Vera Gel (the purer the better) and get some Essential Turmeric Oil. You mix the two together in these proportions - you need to ensure that you only get small drops of the essential Oil. Find a clean airtight container and place 2 tablespoons (that is the largest one's) of the Aloe Vera gel in the jar or otherwise, container - I would start with 2 small drops of the Essential Oil, and mix well with the Gel. Apply a thin coating to your entire vulval region, ensuring none of the little 'nooks and crannies' of the vulva are not left saturated, by rubbing it in with more of a massage motion. Try this for 2 or 3 days and if it feels a little bit better than what you previously had - the next time you do a mix add 4 small drops of the Essential Oil and try this. You can actually add up to 6 small drops per 2 tablespoons of the gel - and I would suggest that if you gain benefit from using the mix, then find the strength that suits your skin the best. As I say, you need to try this without using other applications such as the Coconut and Emu Oil for at least 4 or 5 weeks. At a later date, if you wish to add them back in again, then by all-means do - but the thing to watch out for is whether one thing you are applying is not outdoing the beneficial impact of something else. One easy way of using different things could be to apply one thing early morning and something else early evening, or immediately prior to going to bed.
Good Luck, and get access to a Vulval Skin Specialist if things simply are not working out for you .....
beverly52803 Wee_Dugie
Posted
Wee, you must have something special going on re the moderator. I recently mentioned a book (not in caps) on auto immune disease and that was blocked. Has happened with med names as well. After a name is mentioned enough times it seems to pass. A med is a med so that seems rather arbitrary. There needs to be a better system. I am clearly not the male MIT graduate chemist who wrote the book, so I am not trying to improve its sales. He lists supplements he takes which may be beneficial to people with LS. It's how I derived my list of what to try. Can you think of any reasons to block a book on AI disease by a person who nearly died of his?
Wee_Dugie beverly52803
Posted
Hi Beverly - I agree with your comments, and a better means for sufferer's like us who are merely trying to help suffers get through life with as least impact as possible from the LS and the broad range of other symptoms that they are suffering.
In terms of the book however, I would think there would be strict guidelines for this on any independent medical web site - such as not being seen to promote one thing over another. Neither can a claim be levelled that someone has taken information on here that is publicly available to anyone, then put something in place, then come to some level of harm, irrespective of whether such a claim can be fully justified or not.
So that gives the likes of you and I two main options - we can Personally Message the individual and provide the details such as a book title, supplement to take or use or medicinal approach to try. Of course this denies the opportunity of other, or future readers from also benefiting from what we are recommending.
The other is to use the "Report" Flag in the bottom left-hand corner of each text box and throw it back to the Moderator to give an explanation. The unfortunate recent circumstance regarding this web site is that during the recent 'wobbly-moments' - where the likes of email alerts where not linking to Forum Thread messages - I actually tried contacting the Moderator several times and the dialogue box you get once you click on the flag would not allow me to enter any text and simply disappeared from screen numerous times. I simply gave up, rather than get more annoyed and frustrated with it!! So there you go .......
Alex1968 Wee_Dugie
Posted
Thanks for your help!