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Need help stepping down steroid

Posted , 14 users are following.

forumuser156
forumuser156

Hi All,

I am hoping someone can offer advice. I am in the uk, 38 years old and presented with severe itching and white patches 'down there' a year ago. My GP visually diagnosed LS, and sent me home with Betnovate ointment and Cetraben emollient. I used it as prescribed - twice a day for 3 months, then once a day for 2 months. For the last 6 months, I have had problems stepping down the Betnovate to every other day. Every time I try, the severe itching is back within 24 hours, plus the stress is causing me to have 2-3 periods a month which just adds to the drama. I've been referred to Dermatologist who said she can't see why LS was diagnosed as I dont have any change in architecture and she can't feel any thick skin, and there is nothing to biopsy. Then got referred to Vulva clinic and doc there said the same and is not convinced its LS, but did say I have to try again to step down from the steroid. She gave me Lidocaine and said to use it once a day in the evening, with Betnovate in the morning for a week, then try Lidocaine once a day with Betnovate every other day. I am still in the first week of 'dual running' and 4 days in I'm back to severe itching but with red rash and pimples front and back which is new. I have emailed the new doc to find out if this is normal or if I should stop the Lidocaine and waiting to hear back as this definitely does not feel normal. Over the last year the things I've tried to stop the itch is epaderm ointment, coconut oil and emu oil but these had no effect; only the daily use of Betnovate stopped the itch. I already have a restricted diet in place, no sugar, regular exercise, for many years prior to getting this and have never had any health issues before this other than the odd cold/ flu in winter. I am currently waiting for my aloe vera gel to arrive, but I was wondering if this is what everyone (appreciate different people all have different experience with this nightmare) with severe itch experiences when trying to step down the steroid? Does the itching ever stop? After a year of suffering, I only just got my head around this thing and felt like I was in a good place, and now I am back to square one, its very heartbreaking and hard to start from scratch again to get a diagnosis. I know a lot of ladies have felt the same over the years and this forum has been a lifesaver for me. Thank you for reading/ listening to me whinge.

0 likes, 31 replies

31 Replies

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  • pat0423
    pat0423 forumuser156

    Posted

    I’m following discussion as I’m having a rough time stepping down too. I was down easily to once a day with betamethasone but I’m in a terrible “flare” (my new normal, sadly) and am back to clob twice a day. Mostly for pulsing/activity I can constantly feel  and active pain. The clob is semi-irritating at first but the only thing helping even if only a little. 

    I use emu oil, aloe and a couple punches of baking soda in squirt bottle every bathroom visit. I either baking soda  soak or do a compress every day or every other day. 

    I’m kind of at my wits end. Day after day and feeling tortured. 

  • susanCM1
    susanCM1 forumuser156

    Posted

    I live in Southern England and would like to know where a Vulva Clinic is. I've had this since 1998 ish, and no one mentioned one to me. Marvellous isnt it the stuff we find out on this kind of forum.

    • Blueplum
      Blueplum susanCM1

      Posted

      Hi Susan, 

      Do your research, which hospital cover vular clinics. I found that the London free hospital had amazing reviews for LS so requested my gp to refer me. Although it was a trek too & a good 5 month wait for an appointment. With LS you have to instruct your gp what treatment you require as they a) don’t know b) just want to move on with next patient. Good luck. 

    • Bridge_of_Sighs
      Bridge_of_Sighs susanCM1

      Posted

      Hi Susan

      There's a vulva clinic (Vulval Dermatology) in Bristol at St Michaels. Are you anywhere near Bristol? They do take the standard steroid route and I've had mixed experiences, depending which doctor I saw, but it's nice to know that you're being kept an eye on.

  • Blueplum
    Blueplum forumuser156

    Posted

    Hi hun I can totally sympathize with you. I’ve just turned 38 been diagnosed 6 months ago. All this mix information just is confusing, I’m having the same issue my gyno is saying now it’s just a skin condition see a dermatologist no LS present. But 3 months ago it was. I’ve stopped using clob as white patches have gone, left with itching at times and dry skin. Vulvar clinic now say I’ve got fusing happening to labia minora and most it it has shrink specially one side! 

    I’m freaking out as I’ve completely changed down there. 

    Work what’s best for you as these professionals just can’t deal with these issues and fob us off with no cure for LS. 

    Are you dairy free by any chance? I’ve found that changing my diet helped. 

  • j14251
    j14251 forumuser156

    Posted

    Hello. I can appreciate your pain as I’ve had severe nightly itching for over 4 yrs. I did have a biopsy done and my Gynecologist confirmed LS however at the time she said it did not appear as LS. I have no other symptoms. 

    I have tried clobesterol (steroid) but it irritated me. I’ve also tried every kind of oil, coconut, olive, caster and even canola. I’ve used aloe, wild yam salve, baking soda baths and recently an ointment I ordered from Amazon that I had high hopes for- no luck. I regularly check this forum hoping someone finds something but so far nothing has worked. I’m also on a restricted diet-no sugar, gluten or dairy. Also gave up coffee. Wish I had some better news. I’m still looking for the cure. 

    • lori64430
      lori64430 j14251

      Posted

      Hi 

      I wanted to ask if you still itch every night?  The reason I ask is because for me the itching itself was causing all my problems and the itching was a vicious cycle that your body gets into an itch cycle and if you can STOP the nightly itching you will heal. Stopping the scratching when it itched  was something I had to figure out how to do because I would scratch in my sleep and not know it so I decided to tie my Jammie pants in a knot at night so I could not get to my vulva and the first 3 nights were very hard and I would wake up with itching that I wanted to scratch so despertly but I just coated it with coconut oil and did NOT give into the urge. After a week the itch cycle calmed down and the itch went away. What I have discovered after having LS for 35 years is that if you stop scratching the itch you stop the progression. I was just wondering if you have tried NOT to scratch when it itches.?  I am 55 and I was diagnosed at age 21 with a biopsy, but I do believe I have had this since a small child. I hope you get some relief as I know this disease to be very life changing. 

    • j14251
      j14251 lori64430

      Posted

      Hi. Thanks for sharing. I actually read your post a few days ago on the subject and have thought of it every night since. Your will power is amazing because it is not easy and I have not been successful. As dumb as it sounds I have these unused oven mitts that I think I’m  going to put on before bed and see if that helps. Like you experienced, I too wake in the middle of the night scratching. It’s torture and bliss if you know what I mean. I know I need to stop-it’s so unhealthy.  I really appreciate your  support! It’s good to know someone else has gotten past the terrible itch. 
    • lori64430
      lori64430 j14251

      Posted

       Hi   

       I know exactly what you mean about it’s pain and bliss at the same time because nothing in this world felt as good as  scratching that itch.  It was almost euphoric.  I think the reason we can’t stop scratching is because it is so pleasurable while we are doing it.  I too tried the gloves and what I noticed was I would take them off in my sleep and there I would be scratching.  I also tried skiing gloves where you could tighten them really tight with the Velcro those worked a little bit  but for me the only thing that worked was wearing a pair of jammy pants that I could tie in a triple knot so I could not get my hand down there to scratch.  Once you stop the itching cycle the tremendous urge to itch will be gone.  I would only ever scratch at night and let me tell you it was very pleasurable but the damage that I would face in the morning that would take a week or two to heal had to end.  All of my white callous patches came from itching and I remember that I could literally after a week or two peel them off.  It was the body protecting itself from the trauma of scratching so it would build up a big white callous and then a week or two later it would shed.  I remember being able to pull the white patches off as they were healing.  I would wake up in the morning after a night of scratching and my first pee in the morning would sting  so badly because I had made my skin so raw.    The self discipline I had to stop the scratching came from knowing that the older I get the worse it would become.  

       As you go to bed each night tell yourself I WILL NOT SCRATCH.  Your mind set will subconsciously keep you from scratching so tell yourself before bed each night I will not scratch.   But then of course you must have some hindrances like your pants tied in a knot or gloves over your hand to also aide you in not scratching.  For me it took about one week and after that one week the itch cycle was gone. Start tonight. I am rooting for you!! 

    • jacqueline96242
      jacqueline96242 j14251

      Posted

      Maybe you should try cbd ointment and drops . I’ve been recently diagnosed with LS  a month ago . I have an appt with the skin specialist end of August. I have very sensitive skin anyway so taking a list of ingredients and see if I can use it . Hopefully it may help . I’ll let you all know what happens . At the  moment I’m on clob and cetraben as prescribed by doctor , not sure if it’s dojng anything as I don’t itch with it anyway , I have white patches and fusing . 
    • j14251
      j14251 lori64430

      Posted

      So it worked! This is such a big deal as there’s only been one other night in the last 4+ years where I haven’t scratched at that blasted itch and I think I was possibly because I exhausted and slept through it. 

      Thank you so much for the advice and support! It was too hot last night for long pjs so I opted for these oversized mittens. I told myself there was no way I was going to scratch, not tonight. I caught myself once during the night readying myself to take them off and relieve the itch, but stopped, said no way and fell back asleep. Several times I rolled over, awake enough to acknowledge the mittens were still on and in the morning lo and behold they were on my hands. 

      Thanks again for posting about your experience. It’s so helpful to know that there is someone out there who has conquered the itch. So I’ll keep at it. If I survived it be night I can surely take on six more. Just curious, has it ever returned for you? 

    • lori64430
      lori64430 j14251

      Posted

      Hi!

       I am so glad to hear that it is working!   The itching on its own has not come back.  I do however always tie my Jammie  pants up or like you are doing wear gloves for a hindrance because I do not trust myself in the middle of the night when I am asleep and don’t realize what I am doing.  I have not noticed it’s coming back throughout the day or anything and I think it’s because  scratching creates itching.  If you go to Google and type in, “does scratching create itching” you will read many articles that talk about how when you start scratching an itch serotonin is released in the brain that gives you a pleasure feeling and the body gets into an  itching cycle which causes damage to the area you are scratching.  If you can deliberately and consciously make effort’s every night to not scratch you will heal and find immense relief.   I am cheering you on and I know that this will lead you down the path to healing.  If you can stop the itch you can stop the progression.  Every night go to bed being excited that you’re not going to scratch and when you wake up in the morning you’re one day closer to healthy skin in that area.   Way to go !! and I’m encouraging you to keep it up!!  

    • beverly52803
      beverly52803 lori64430

      Posted

      lori, I believe scratching the skin produces histamines. You are correct re how important it is to not scratch. Maybe hypnosis or meditation would help? I don't do either, but I also don't have severe itching. I think mine may be due to a non-specific vag infection as flagyl stops the itch. I am now trying probiotic capsules. Also drink kefir every day. 

      Wish you and everyone else on here good health.

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