Posted , 7 users are following.
BIT OF ADVICE PLEASE! DOWN TO USING STEROID NOW TO TWICE A WEEK. FINDING THE AREA IM PUTTING IT BECOMES QUITE SORE AFTER USING AND GETTING A COUPLE OF SORES. DOES THIS HAPPEN? WORRIED TO USE ANYMORE. WAITING TIMES IN UK ARE HORRENDOUS WONT SEE SPECCIALIST AGAIN TILL END OF FEB( WHICH WILL BE 6 MONTHS) GP JUST SAYS MAYBE USE IT MORE
0 likes, 12 replies
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beverly52803 Su02
Posted
After using the steroid for two months I had one incident using the steroid after a one day bout of diarrhea. The anal area became very sore and inflamed so I stopped using the steroid for about 9 days as things calmed down and my gyn said it was safe to try it again. No problems with it since . However, there were no new sores.
Isn't your GP able to confer with a specialist until such time that you are able to see one ?
Su02 beverly52803
Posted
ive been trying to go really sparingly with rather than just stopping. Although i have at the moment till the soreness subsides. I actually feel worse now than i did before the treatment. Thanks beverly i can only try but the specialist said if i feel no better after the six months she will do a biopsy. I mean i have no doubt its LS but the steroid is definately not helping matters
Guppy007 Su02
Posted
Hi Sue, If you were using the Cob cream to get rid of white plaques of skin and that has worked then I would stop using the cream. If however you still have white plaques of skin it is probably worth stopping the cream for a few days and then trying again at a later stage.
Also, putting the steroid cream on sores is often too much. I found that it was too strong and so you could try something like Desitin or any baby bottom cream for those.
Su02 Guppy007
Posted
Thanks GUPPY that does make sense, It was fine the first few months., but just seems to aggrivate at the moment. Im leaving it until this soreness has settled im using sudercream but thats stinging at the moment so will have a look for nappy cream.
Vita23 Su02
Posted
Hi Su, I am so sorry you are going through this! Try emu oil, if you can find one there. It moisturizes and is anti-inflammatory. Manuka honey (the one you buy from the grocery store) helped me, too. Manuka oil in grapeseed or some other carrier oil would probably help, too. Grapeseed oil was calming for me. But what really did the job with the sores and whiteness was an anti-fungal+steroid combination cream. Later on, I added oregano oil capsules (1 a day for a week) and cranberry juice to clear bacteria and fungus on the insides. Add vit. B complex, too, just in case you need some support with liver detox. Curcumin pills will lower your overall inflammation, but I don't have experience taking them during the flareups.
Su02 Vita23
Posted
THANKYOU VITA I THINK WE CAN GET EMU OIL HERE YOU CAN USUALLY FIND MOST THINGS ON AMAZON! ITS VERY FRUSTRATING TO KNOW WHAT SETS IT OFF BUT FEELING THE STEROID IS NOW AGGITATING.
janet67047 Su02
Posted
HI SUE 02
I found steroid ointment too strong, as I frequently broke out with open sores very painful on passing urine. what is working for me is Clobestasol cream 0.05%. twice a week, and using vaseline every day to help keep unine off. its harmless, less difficult to clean, it helps me. I had my 6month check yesterday, the dose was reduced to once per week and keep using vaseline as I am. all under control now. Ive had L.S. for 7 years, and my first biopsie (for cancer) this year. all clear. hope this helps
beverly52803 janet67047
Posted
janet, is that a milder strength Clobetasol than typical? Or is it standard and using the vaseline made the difference?
I have been using a milder steroid for 6 months twice a week and am to continue this regimen as there are some remaining areas that aren't particularly bothersome, but it does concern me to keep using a steroid. Do you have any remaining areas that you can see? I now have a tingling /poking sensation on the clitoral hood which is very concerning to me, but the gyn saw nothing to indicate the LS was spreading there.
I don't use vaseline, but do use coconut oil which helps, but doesn't stop the sensation entirely. Have you experienced anything similar?
Su02 janet67047
Posted
HI janet
IVE LEFT OFF THE STEROID FOR ALMOST A WEEK NOW FEELING MUCH BETTER TODAY. STEROID IM USING IS BETNOVATE 0.1% SO IT IS MILD. PLUS I USE CASTOR OIL. I THINK I WILL NOW GO DOWN TO ONCE A WEEK UNTIL MY NEXT APPT IN FEB JUST TO KEEP IT GOING. I SUPPOSE I HAVE TO BE PATIENT WITH TRIAL AND ERROR IVE ONLY BEEN DIAGNOSED SINCE AUGUST. IM VERY GRATEFUL FOR ADVISE ON THIS SITE ITS A GOD SEND
Bridge_of_Sighs Su02
Posted
Hi, I'm in the UK. I find Epaderm ointment (not cream - use the one in a tub with the Vaseline like texture) is a very good barrier and soothing too. I use it if I am sore or if I am out all day and know that I might not be able to wash after a wee. You can get it over the counter at any pharmacy, it's about £12 for 500g. It acts like a moisturiser as well. I also use it daily instead of soap down below. It was recommended to me by a doctor whose daughter had terrible eczema, he said he'd tried everything and that was what worked best for her. I swear by it too.
At home I use borax and avocado or olive oils with essential oils in, but I think you want something for now don't you? Longer term care can be sorted when you are more comfortable.
Good luck with the specialists, have you tried ringing for a cancellation every now and again?
Bridge
Su02 Bridge_of_Sighs
Posted
Thankyou fir your advice, I do use hydromol for washing but i will endeavour to dry Eparderm. No i didnt think to ring for any cancellation as my appt has already been pushed back from JAN to FEB think thats why i had a meltdown. I have tried bi carb baths with a sprinkle of lavender oil.
Su02 Bridge_of_Sighs
Posted
Also Bridge thanks for the tip on getting a cancellation ive just rang and they have put me on the list so hopefully i can get seen sooner! fingers crossed
SUE