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Dermovate twice a week to keep vlp under control?

Posted , 6 users are following.

Cheetah
Cheetah

I was discharged from dermatology in May after the vlp completely cleared.  Four weeks later it flared up again and I've been following a regime from the North Bristol Trust, which I found online.  Dermovate once a day for 2 weeks, every other day for 2 weeks, then twice a week.    I also moisturise every day after going to the loo.  The inflammation still hasn't completely gone, so I'm wondering whether to just carry on using it twice a week.  Has anyone else found that they have to apply it twice a week in order to keep it under control?

0 likes, 13 replies

13 Replies

  • Janidali
    Janidali Cheetah

    Posted

    Omg, HI,

    After a bout of cystitis in June, which was treated with antibiotics, I got this terrible burning, down there, which took me to my gyny in tears. Have been using Dermovate now for 5 weeks twice a day which helps but it hasn’t entirely gone and when doing a lot in the day it gets worse, I cannot sit with legs in air all the time and am completely fed up. I am also on holiday tryi g to manage this which is awful in the heat. Next week I will have to go back to Dr butwhat on earth gets rid of this!?????

    Also so scared that I have read it can turn nasty which really frightens me!

    what can be done???

    • Cheetah
      Cheetah Janidali

      Posted

      Lots of sympathy, I know what it's like!  All I can say is that from seeing the dermatologist last October and using the Dermovate daily for a month, then twice a week for a month - and repeat - it took till May to clear completely.  So 8 months in total for me, following this regime, but you can still get flare-ups after this, as I have found.  It's really down to managing it for me now and using the Dermovate when I need to.  The good news is that the dermatologist told me that it usually burns itself out eventually, but everybody is different as to when this happens.   I know it's scary thinking of complications, but the best thing you can do is make sure you examine yourself frequently and carry on using the Dermovate when you need to.  Also, use a moisturiser during the day, Zeroderm or Hyrdromol are both good and act as a barrier to urine.  I use Zeroderm every time I go to the loo.  I hope that things soon improve for you.  You're not alone!

    • Janidali
      Janidali Cheetah

      Posted

      Thanks for that reply. I will try to get those items also.

      god this is awful. I hate this especially in this heat!

       

  • kathryn07219
    kathryn07219 Cheetah

    Posted

    Sorry to put a dampener on life but ...... LS does not ever clear up.  There - I've said what the doctors daren't tell you.  You will have periods of being itch-free, possibly for months, and then, for no apparent reason, it will suddenly start up again.  Keep an eye on this forum for coping methods.  If anybody finds a permanent cure, do let me know.  After several years, my consultant at least had the good grace to own up to the fact that there isn't a cure and the condition isn't glamorous enough to encourage research.

    • Cheetah
      Cheetah kathryn07219

      Posted

      You mentioned LS Kathryn, not LP, so wondered if you meant Lichen Sclerosus and not Lichen Planus.  They are different, although they can both affect the vulval area.  My dermatologist definitely told me that LP would burn itself out eventually..
    • Halvah5200
      Halvah5200 kathryn07219

      Posted

      Your consultant got it right in my humble opinion -- the condition isn't glamorous enough to encourage research which is just what we need. It looks to me like more research is being done in Australia, New Zealand and the UK than in the US. I'm trying to encourage more research here (US) but its a puzzlement on how to do that. More support groups I suppose, or joining all of us in some sort of coalition and get people to write in to research groups asking for their support. If any of you have an idea on how to publicize LS and VLP please post it. We need all the help we can get because it doesn't look like MDs are paying much attention. 

       

    • kathryn07219
      kathryn07219 Cheetah

      Posted

      Hi Cheetah - I started with LS and then had a cross over to LP so I have bits of both on various parts of my body.  I was told the LP would probably spontaneously clear too.  It's been 3 years and it hasn't.  In my case the worst area of LP is my nails which have all but disappeared now leaving me with very sensitive and splitting areas.  I was told steroid injections into the nails would stop LP going any further.  It didn't.  The injections were extremely painful and apparently I am the only person they haven't worked for.  I do not believe that I am the only one.  I am guessing that most people don't bother pursuing it any further.  I really don't think there are any long term solutions to these two interconnected problems.  I'm not even sure I believe that doctors can tell the difference or that there really is a difference!  They are both auto-immune diseases and both seem to have the same effect.  

  • Janidali
    Janidali Cheetah

    Posted

    Let’s hope it does clear up I cannot bear the thought of it not going. Already not happy having it 5 weeks!!!

    my life seems like it is on hold as I feel so depressed I cannot do much without focusing on the discomfort I am having.

  • annc68
    annc68 Cheetah

    Posted

    It seems that most health providers have a "variation on a theme" when it comes to the best way to use Dermovate. I was told that it is such a personal chemistry type of thing that it depends on the individual how it well it will work. Conflicting advice is a problem, as this forum shows!! It's kind of, if you manage to find a regime that works for you and your doc, etc are happy with it, Eureka!! The other problem I have found with long term use of steroids is thrush. It can seem like lp and so it is always worth asking to be checked. I have despaired thinking that the Dermovate isn't working when in fact I needed treatment for thrush. 

    Hope this helps.

    • Janidali
      Janidali annc68

      Posted

      Hi Ann,

      How OMG have you had it and how often are you using the Dermovate?

      i was told by my Dr to use it twice a day for 4 weeks and then twice a week, but it is still quite uncomfortable when I do not use it. So worried it isn’t going away yet?

      also I flew today from Spain back to London and now after the flight it seems worse. Not sure why that may be.

      am so fed up and it is so hot here in the UK I am so depressed!

    • Janidali
      Janidali

      Posted

      Sorry Ann meant it to say, how long have you had it. Not sure why it changed to OMG. That was an error. So sorry.
    • annc68
      annc68 Janidali

      Posted

      Hi Janidali

      I have had vlp for about 7 years or so. I was diagnosed with olp 11 years ago. It flares from time to time. Sometimes I can go for best part of a year with no problems, even longer some years. However it can just flare very quickly. Stress is supposed to be a factor for some people and I find that is often the case for me but not always. It is so frustrating not to be able to have a definitive explanation and follow a recognised course of action.

      I use Dermovate as prescribed by my hospital. Twice a day for 3 weeks and then scale down. 

       So much seems to be trial and error. Personally I don't have baths or even use soap or cleanser, in fact I can only use warm water. No tight jeans ( easy for me at 72!) and go " commando" at home when possible. Lots of suggestions for creams etc on here so check out some earlier postings by searching.

      Sitting for a long period of time does cause extra pressure down below which doesn't help. Also you can't use any moisturiser as you would at home and so dryness can cause discomfort. 

      It can really get you down but this forum is a great help, you are NOT alone!! Anything is worth a try as if it has worked for one it may well work for someone else. 

      Hope you find something that works for you before too long. Good luck!!

      Ann

    • Janidali
      Janidali annc68

      Posted

      Hi Thanks for that. Went to gyny again today and she says it is better than a few weeks ago but it must be sore. She gave me some Emla cream to numb the area. I just hope it settles as weather cools next week.

      This is awful!

      X

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