I've been using Dermovate (Clob) for almost 3 months, daily. My third appointment with the gynae is this coming week, so I will see what to do from here as I think I've been using it far too long. I was told to use the ointment daily until things improved, then drop back to twice a week. The thing is, things haven't "improved" - maybe sometimes for a day or so but in the end the skin just breaks again. So I haven't ever got to the point of cutting back on the steriod application. Has anyone else had this problem? I'm thinking of stopping the ointment altogether as it doesn't seem to be working, but I'm also worried that if I do, I will make things worse.
Call your dr and tell them! I dont have much advice for you. Mine has been coming back after i finish the steroid cream treatment. My dr said try the round once more but to call if it comes back again. Keep on top of it! I know its frustrating!!!!
Thanks Robin. It really is frustrating - think I'm worse not better! Oh well, I'll see what happens with the dr this week.
Im fairly new to this but yes the steroid cream helps for a while, but soon as I back off on it, it gets worse again plus just anything I do irritates and aggravates my skin. I find even the act of rubbing the cream on. But it does get a little better. I am very frustrated also. If I abstain from sex for as long as possible it gets somewhat better. But then I try again because my husband feels deprived and soon as I do I go right back to square one. When I was perscribed the steroids the said see them in 3 month. I looked into seeing a Vulva specialist, but unfortunately he doesnt accept Insurance so I have to pay 500 up front and hope my insurance will reimburse but right now dont have an extra 500.
Speak to your doctor/gyne and see if protropic may be a suitable alternative for you to try.
While LS is active, sorry to say, it is better to stay away from intercourse. Hopefully your husband will understand that you need time to heal.
Check your diet as well - many in this forum are helped by staying away from sugar. Others, like myself, also eat gluten free. I also stay away from dairy, except for a good quality yoghurt.
For your body to become strong enough to push LS into remission (there is no cure, but you can make it liveable) there are a few changes in lifestyle one needs to make. As far as the steroid goes - eventually you will be able to go to what I call a maintenance level. Just to keep it at bay.
My greatest help has been baking soda baths and rinses after every bathroom visit and the use of coconut oil for lubrication. I don't know whether you read about that already in the various discussions.
There are other people who have benefited from Borax.
Hope this is of some help to you.
Thanks Charlotte. I hope you can find a specialist that your insurance can cover. I guess all we can do in the meantime is persevere with the creams and try the suggestions of many of the contributors on these posts.
Do you happen to know if bicarbonate of soda is the same as baking soda?
Thanks, I will ask him this week.
Hi Jeannie I was using the clob for 9 months daily before I could safely say it had gone into remission and I could start cutting back to twice a wk. I honestly never thought I'd get to that point but spoke to consultant who convinced me to persevere and so glad I did. I also washed and moisturised with epederm which helped no end. Now I am using a less strong steroid couple times a week to keep under control . Hope this helps - Jo x
Don't stop using the ointment. The thing about it is that it actually heals the skin but also thins it, so while it helps with the symptoms of LS it also makes the skin a bit more fragile. Many of us use other non-prescription oils or creams in addition to the clobetasol to help improve elasticity and overall comfort. I use clob 2-3 times a week after a warm bath before bed, and then also use emu oil every morning and night (on non-clob nights) and usually at least once in the middle of the day as well. Some people alternate oils for variety (jojoba and coconut oils are two good options). Aquaphor can also help prevent breakage, but I find that's best for when you already have some cuts or breaks in the skin that need to heal rather than as an everyday preventative method.
Yes, they are the same thing.
I used to use the clob ointment but this time my Dr prescribed it in cream base. Which do you think is better. I used to just glob it on. Then I read i should be rubbing it in, so now thats kind of what I do.
I definitely think the ointment is better. I was once given the cream by mistake and tried it, but hated it. It didn't work as well for me and actually felt irritating when I rubbed it on. I gave it about a week and then called my gyno to fix the prescription and give me the ointment instead. You don't need to rub the ointment in as much and a little bit goes a long way. It also doesn't irritate me the way the cream did.
Thanks, I might try going back to the ointment. It stung me pretty bad when I used it before but I had cuts at the time. Ive read the ointment is better and Ive read the cream base is better so I dont know. I guess try both and see what works best?
Yes, the same thing. And cheap to boot.
A small remark - use the smallest amount. More steroid does not mean better. Just thin layers. When you say 'glob it on' I imagine you putting on lots of the Clobetasol. I made that mistake and paid dearly.
Thanks, there is no real guide to how much to use. I just a fingertip full. What do you mean you paid dearly, what happened?
Thanks Jo that's reassuring.
OK thank you. I am not sure what Aquafor is but assume I can get that from a regular pharmacy?