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Linchen Planus I had it over a year and it's now getting worse! Help pls

Posted , 3 users are following.

IhateLP
IhateLP

Hello everyone,

I was diagnosed with LP over 8 months ago, even thoguh I have nene suffering for about 14 months now. First 6 months they treated me for egzama. 

I am now literally covered head to toe.  I started losing hair about 2 months ago. Picante sleep because of itching. Doctors are useless. They gable me antihistamine to stop itching. Non of them worked.

i don't want to go back on stereoids as they make me put weight on.. I am soo desperate, anyone out there please help. 

I have to sleep, because of itching I can't then my skin looks horrible  now it's on my neck. Only place left it's my face. I am so scared it will come to my face. Please?????

0 likes, 3 replies

3 Replies

  • carol00748
    carol00748 IhateLP

    Posted

    It is so sad that so many people are suffering with this condition and so little seems to be being done in the way of research or treatment developement. 

    There are treatments used for a number of other auto-immune condition like rheumatoid arthritis and I believe these types of treatments can be used for severe cases of LP- which yours certainly seems to be. I would suggest you ask your Dr to refer you urgently to a specialist. These other treatments are not steroids and do not have the effect on weight that steroids can do. I also think your GP could give you something else to help you sleep- I think chlorpheniramine (an older anti-histamine- common brand name Piriton) has a more sedative effect than the newer anti-histamines like Loratidine, and also another medication I've seen used in the past to help the intense itching at night in conditions like eczema is phenergan- so it might be worth asking about then. Not sleeping makes everything so much worse. Cooling itchy skin can help itch at well- perhaps try putting your moisturiser/ emollient in the fridge and then putting it on when the itch is bad might help. Using bandages like viscopaste or icthopaste also works well to soothe itchy, dry skin- it might be worth asking your GP about that- but get a nurse to show you how to apply it as it must not be just wound round and round- it is a bit messy but really soothing and nourishing to the skin. Like all things, it may or may not help- so if it anything makes your skin feel worse stop it/ remove it/ wash it off and get advice. 

    Good luck. 

    • IhateLP
      IhateLP carol00748

      Posted

      Thank you for your reply. 

      The worst feature for me is itching, specially in the middle of the night then can't go back to sleep sad

      No cream stopped me itching so far. Only medication worked is a pill called Ciycsoporin (mainly used for autoimmune disorders - specially people who had an organ transplant) but I am so scared to use it due to 2 pages of the side affects sad

      But don't want to lose my hair either. So been taking it.  

      My skin looks horrible, got so much dark patches, my arms, side of my belly my ankles, my wrist, back of knees, back of my shoulders. 

      I feel like no point of going to see my GP. I BEILEVE there is a medicine out there but as it's too expensive they are not prescribing them. I had to go to private to get the medicine I mentioned above. Took it 3 times and stopped itching. 

      Anyone else is out there, suffering like I do? Anything helped??

      Thank you

  • edele97960
    edele97960 IhateLP

    Posted

    Hi. I was with dermatologist today and got started on aziphrone.....spelling is probably wrong. Basically it is an immuno suppressant drug they give to transplant patients so their body doesn't reject organ. It has also been used in patients with auto immune diseases.  

    Like u I have it practically everywere on my body including vulva and mouth. My dermatologist says its the worst case she has had and is very aggressive.  Like u I have been on steriods but as soon as I come off them lp flares up again. 

    Its a bloody torture.  With this drug there is the downside I have to get bloods done once a week.  that's a bit s**t. Plus I will have no immune system and have to be extra careful in sun.....no sunbathing.  U don't put on weight with it which is great as I put on over a stone and a half being on steriods. 

    it will take 6 weeks to start to work if it works but at this junction I am willing to try evrything. 

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