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Is anyone getting treatment in the U.K.?

Posted , 36 users are following.

LSpatient
LSpatient

Most posts here seem to be from America. Is there anyone out there getting treatment in the U.K.? If so where and what? Are there any specialists?

1 like, 81 replies

81 Replies

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  • Gillian1956
    Gillian1956 LSpatient

    Posted

    Hi you need to see your doctor and ask to be referred to a dermatologist or gynocolagest you will get treatment you need have you had LS  confirmed  
  • jules92034
    jules92034 LSpatient

    Posted

    Hi I'm in the uk. I was referred by my doctor to a gynaecologist at the Hopsotal who confirmed the diagnosis and treated me (steroid cream and amatryptaline have worked for me)

    • LSpatient
      LSpatient jules92034

      Posted

      Hi jules. I was first referred to a gynaecologist who diagnosed LS and I was put on steroid cream and vagifem to insert. Then I was referred to a dermatologist. I had biopsy to check for cancer (all clear) and now have steroid ointment (dermovate), lidocaine and dermol wash.  Amatryptaline has been mentioned but seems to have a lot a side effects so not tried that yet. How do you find it? I am treated at the RVI Newcastle, where are you?
  • Guest
    Guest LSpatient

    Posted

    Hi I am in the UK, I rather feel I am dealing with this on my own.
    • LSpatient
      LSpatient Guest

      Posted

      Hi Teresa.

      I pretty much feel the same. You get this diagnosis and are left to get on with it. I don't know if I'm expecting a cure ( which I know there isn't) but having to look and check every day and put on ointments makes you a bit paranoid about what is happening and even if what is happening is the same or different to others. I've also been diagnosed with some sort of lichenoid in my mouth (mainly my gums) which is another worry.

      We aren't alone, but you feel like you are. Are you getting good treatment? 

    • Larelli56
      Larelli56 LSpatient

      Posted

      Hi ask to see a specialist nurse at the hospital. They are specially trained.

      Yvonne

    • V3301
      V3301 Guest

      Posted

      im feeling like this too!!

    • arlette66668
      arlette66668 Guest

      Posted

      yep me too. i was diagnosed and given cream and a repeat prescription for dermovate three years ago and that was that. three years ago!

  • frances87895
    frances87895 LSpatient

    Posted

    I'm in Australia and the treatment here is not unlike what is prescribed in the US; think they are reading from the same script.  I find the comments on this site most helpful.

  • jill4444
    jill4444 LSpatient

    Posted

    Hi LSpatient.. I am being treated in South Yorkshire by a good dermatologist at the hallamshire hospital. I was given the usual steroid ointment and she recommended Zinc & Castor Oil cream for moisturising and Dermol 500 for washing. I am now in remission but still on the maintenance dose of steroid just twice a week. I have to say the zinc & castor oil cream has in itself been amazing and I’m sure one of the main reasons I am now symptom free. 

    • LSpatient
      LSpatient jill4444

      Posted

      Thanks Jill. Where do you get zinc and caster oil cream from? Glad to hear you are now symptom free.
    • jill4444
      jill4444 LSpatient

      Posted

      Hi, just from a local chemist but not all of them stock it but you can order it.  I was using sudocrem on my groin as it looked like the LS had spread there and the ‘milder’ steroid I was given had left me burning and peeling! After a few days I found the sudocrem was just not helping and making me even drier. I rang the hospital and was advised to use the Z & CA cream. It cleared my groin problem in 48 hours and since then I have used it inside too and the skin is looking very healthy again. The pharmacy told me that it’s a lot milder and more of an emollient than sudocrem but still has good antibacterial properties. 

    • jill4444
      jill4444

      Posted

      I also need to add that after a wee I try and rinse then pat dry then apply either the dermol 500 inside or the zinc & castor oil. I also have three friends with LS (not as ‘rare’ a condition as everyone thinks).. and they are trying the same things as me. Just hoping it is as effective 🙏 for other people too. Also I am post menopausal so have the vagifem twice a week. 

  • carolineLK
    carolineLK LSpatient

    Posted

    Hi, I'm in Ireland. I was diagnosed a year ago. I'm on dermovate ointment and Protopic cream. I am also on methotrexate injection once weekly. I just want to caution you about Amitriptyline??. My daughter was on it for migraine and unfortunately it caused two seizures 😱. She couldn't drive for 6months, she couldn't be left alone, she couldn't socialise. It really impacted her life. Her shoulders dislocated during the seizures and she's still having problems with them. I'm sorry this is not LS related but when I saw Amitriptyline it just rang alarm bells.

    • trishafox1967
      trishafox1967 carolineLK

      Posted

      Hi Caroline. I'm so glad to find someone else in Ireland. I'm in Meath. I was diagnosed 2 months ago and in an awful way. I'm allergic to dermovate so I'm using Betnovate instead. I was advised against amitriptyline and glad I didn't take it even though it was prescribed. Desperation is setting in and I can't seem to find anyone specialising in LS or a support group in Ireland . Wishing you and your daughter well, Trisha

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