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Treatment 'forever' vs as and when symptoms flare up

Posted , 11 users are following.

Joan1978
Joan1978

Having just listened to the Dr Goldstein webinar, I'd be interested to know people's thoughts on this.

Dr Goldstein stresses the importance of continuing the steroid treatment even if you're not symptomatic, as he says there is still active disease even when there are no symptoms, which could increase the risk of cancer.

On the other hand, I've read that a lot of ladies are concerned about long-term steroid use, and only use it when they have a flare up.

Being new to all this, I know nothing about the implications of long-term steroid use, or whether this risk is worth taking if it will lower the risk of cancer.

Anyone have any thoughts or additoinal info on these two different approaches to treatment?

Which do you use, and why?

0 likes, 17 replies

17 Replies

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  • Morrell1951
    Morrell1951 Joan1978

    Posted

    I'm inclined to carry on even when not suffering, but I recentlt found a paper that reviewed LS treatment and the author found wide disagreement among doctors over the use of steroid ointment. Mine switched me to Tacrolimus after 18 months on Dermovate. Oral tacrolimus carries a cancer risk, but I figure the tiny smidgen I use twice a week on a few square inches is worth a miniscule risk. I'm very happy with the three adhesions that have released themselves in six months, opening up my introitus considerably, pulling me back away from the direction of a pinhole to pee through. I give some credit as well to jojoba oil with a few drops of frankincense in it.
    • judy02533
      judy02533 Morrell1951

      Posted

      Morrell, how did you choose your frankincense ?  I have looked on internet, and it is very expensive with a difference in range of sometimes over $20.  They say it should be certified, not sure what that means, no chemicals, etc,  But I also read you don't pay attention to whether or not it says certified.  I want to get the right one, but I don't want to spend a fortune either.   Is more expensive the best?
    • Morrell1951
      Morrell1951 judy02533

      Posted

      We had a young man on here a few months ago, his name is Liam. He has LS and had success un-fusing his foreskin from his glans with this jojoba oil with a little frankincense in it. At my health food store they had pure frank and frank mixed with tea tree oil. I got the 100% frank. I don't know about 'certified'. The jojoba oil came in a small bottle and the essential oil of frank came in a tiny bottle. All together it was about $60 Canadian.

      It's important never to apply or ingest essential oils 'neat' – straight. I bought a small eyedropper bottle, filled it with jojoba oil and then dropped in three drops of the frankincense. I use the dropper to put a bit on my finger and apply it. It's very nice.

  • kimmiesue
    kimmiesue Joan1978

    Posted

    Just wanted to share that for me, the clobetasol worked initially but as soon as I stopped it I had a bad flare-up within 5 days. I started it up again and, only using a small amount, made my itching so uncontrollable that it was worse than any symptom I've had with LS without using the cream. My Dr gave me no alternative and told me to use it anyway. I've tried a few more times and it is just AWFUL so I'm not using it. I don't have the pain, lesions and scarring that many on here have. My itching is my worst symptom so using clobetasol when it makes it 10x worse, I don't think is a good option. I've had some success with taking sugar out of my diet and using aloe with lavender oil and I'm also experimenting with coconut oil. I'm also thinking after reading on here that I need to find a Dr that knows a lot more about LS than my Dr seems to. My Dr didn't give much direction, no alternate ideas for symptom relief, no information on how badly LS can progress, how serious it is, etc. Not quite sure how to go about finding a good Dr in my area though.
    • suedm
      suedm kimmiesue

      Posted

      Where are you? The Melbourne vulval specialist seems to be highly rated by those lucky enough to be referred there. Try and find a vulval clinic , there don't seem to be many, sadly. However if you indicate your town and country somebody may be able to help.

      i understand there are clinics in Bristol and London in the UK

      i have been using. Clobetasol regularly for several years. I am also on 

      hrt. I get a flare up when stressed or cross! But extra days of the steroid works for me

       

    • kimmiesue
      kimmiesue suedm

      Posted

      I am in the US actually. Near Denver Colorado. I haven't heard of a vulval clinic here so I'll have to do an Internet search. Do you ever get the extreme itching with your condition? What does your flare-up entail? I just used clobetasol again 2 weeks ago and one small amount applied gave me such unbearable itching that didn't subside for at least 48 hours that I was in tears. It was truly awful. I have varying degrees of itching as my main LS symptom though and the clobetasol just amplifies it.
    • Morrell1951
      Morrell1951 kimmiesue

      Posted

      Some people react to the extra ingredients in Clobetasol cream, but not to the ointment. This could be your problem. After I watched Dr. Goldstein's presentation I went to my pharmacist and asked for a repeat of my clob, but asked her to give me the ointment rather than the cream. She was happy to, just noted it on the label – "patient request".
    • harriet12877
      harriet12877 kimmiesue

      Posted

      Hello,

      Try taking benadyl at night to help quiet the itch. You will sleep but relief from the itch is worth it.

  • claire12259
    claire12259 Joan1978

    Posted

    Hi Joan,

    I am mainly symptom free now but even when suffering I couldn't tolerate the steroid cream.  It worked initially but then I reacted to it.  I told my specialist I didn't use anything at all topically and she was pleased - never said I should use the cream if not symptomatic. Think you could ask 10 docors and you would get 10 different answers!! x

    • kimmiesue
      kimmiesue claire12259

      Posted

      I know your response wasn't for me but it is nice to hear someone else that couldn't tolerate the cream. :-) Were there other things you did/do to help manage your condition that you could share?
    • claire12259
      claire12259 kimmiesue

      Posted

      Hi Kimmiesue,

      Not just the steroid cream, even emu oil etc. Anything topically just aggravated the condition so I gave up! So now I don't eat dairy, sugar or gluten. I did start eating gluten again recently and my LS (itching mainly) has been playing up but I have also just had 2-3 weeks of stress so it could just be that! (We had holiday in Italy in August and I ate plenty or pizza and pasta and didn't flare then so thought I could eat gluten again).  Anyway we shall see - for the moment I'm back on gluten free unfortunately X

    • kimmiesue
      kimmiesue claire12259

      Posted

      Thanks for sharing. I have recently cut sugar and that has helped a lot. I too tried emu oil and it didn't do anything. Aloe with lavender oil does help. Also, I've been taking Benadryl at night which has helped. I do have stress right now and then this disease and lack of sleep because of it was just making it all worse (vicious cycle). It is daunting to know this will be a part of my life forever but has helped so much just joining this site!!
  • Joan1978
    Joan1978

    Posted

    The more I read about LS, the more complex it seems to get rolleyes
  • Guppy007
    Guppy007 Joan1978

    Posted

    Whilst I respect Dr Goldstein, I do not believe that he has all the answers for everything related to LS, or any other doctors have for that matter.  

    My Vjay looks perfect, no white plaques, or cuts or sores, and so there is no way that I am going to apply steroid cream on something that appears to be fine.  At first, admittedly I did apply cream between my labia minora and my labia majora twice a week, but I wondered why the heck I was doing this with no visual symptoms or discomfort, and so I stopped that.   I sometimes get pain in my clitoris, not often, but sometimes, and then I will apply the cream twice a day for usually around four days, and then I will discontinue use after that.  I truly believe that my routine of spraying with salt or bic soda water after using the bathroom, drying well, and lubricating has been far more beneficial than anything else.

     

    When I was first diagnosed, I did not do the research on LS,  and neither apparently did my Gyno, because she failed to mention the one most important aspect of Lichen Sclerous that I really needed to know about, and that is fusion!! and of course because of that some of my Vjay fused.  Since that time I have carefully maintained my bathroom routine without fail, and I believe this to be the sole reason why I have had no more fusion.

    • Joan1978
      Joan1978 Guppy007

      Posted

      Could you tell me more about your routine, Guppy? Does the steroid cream not prevent fusion? This is the part of LS that scares me the most... I just have the white skin & itching at the moment and want to prevent fusion if at all possible.
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