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New Lichen Planus sufferrer

Posted , 10 users are following.

BobTheBear
BobTheBear

Hi everyone,

Some really good (if thats the right word) stories on here and I dont really know how some of you have struggled on for so long.  Especially those of you with the Oral version, that must be really horrible.

I'm a new sufferrer, since January this year.  Couple of small sports appeared on my lower right leg, didnt take much notice, used some creams, then spots on the other leg and then it starts to spread.

Then lower arms, end of my penis and now randow patches appearing. 

Am reading up on what can be done, doctor prescribed some cream, not really working, but perhaps stops the new patches from getting really large spots.

Have read on here about St Johns Wort and have just bought some cream which I will try.

Couple of days ago I found in the cupboard some cream I'd been sold recently while in Prague.  This is calming cream, with cannabis and primrose oil, made by Isolda.  So thought I'd try this and maybe I'm scrathing less, which is a good sign.  I'd read hemp oil is good, someone said cannabis/hemp are much the same thing, so maybe thats what is doing it.  Time will tell, I only have one tube! 

Did I also read that bananas arent good for LP?  I always eat a banana or two a day, havent had any for a couple of days as I ran out.  Perhaps it's not the cream at all, just no bananas???

Of to Rhodes tomorrow for a week, 30 degrees of sun, so I wonder if that will do it good - or not?  Maybe going in the sea each day in the salt water will help???  Nothing ventured as they say.

I've also tried:

- Double base - no real affect

- Coconut oil - no real affect

- Baby rash cream (cant remember the name, well known one) - no real affect.

Anyway, I'm dam lucky compared to some of you and up to being 57 years old I've never had any real health issues, never spent a night in hospital - so I have been very healthy and lucky up to now.  But now I'm with everyone else here - trying things!

1 like, 32 replies

32 Replies

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  • Guppy007
    Guppy007 BobTheBear

    Posted

    Hi Bob, I have oral lichen planus, and lichen schlerosus.  What I have found to help with both conditions is to cut down on sugar and stress!!  Too much sugar seems to bring on a flare up very quickly for me, and many women report the same. 

    With regards to your penis you need to keep it meticulously clean, and I would have thought that you would need some steroid cream, something like Clobetasol, which is what I use on my  undercarriage for my Lichen Schlerosus when I have a flare up, and that seems to help, although you do need to use it carefully as it is a strong steroid, but it works, and works quickly.  If the cream your doctor prescribed is not working you may need to go back and see him, as you do not want your rash to spread.

    If your condition worsens, you may have to consider your diet more carefully, I am Gluten and Dairy free, and I know that is the last thing people want to hear, but it is possible that you may be one of the unfortunate few  that find your diet impacts your condition.

    • terrinoleen
      terrinoleen Guppy007

      Posted

      Have you found that the restricted diet has helped you. What type of LP do you have.
    • BobTheBear
      BobTheBear Guppy007

      Posted

      Guppy,

      In general I dont have much suger, but will keep it in mind though. Stress, OK there's possibly a bit of that about.

      My penis has more or less cleared up, unlike the rest of my body.  Good news with that, was a tad painful at first 'using it'.

      Gluten free is something I'm considering, what items dont you eat now?   Bread, Pasta, ???

    • Guppy007
      Guppy007 terrinoleen

      Posted

      I have Oral Lichen Planus, and Lichen Schlerosus, which can be really bad when I have a flare up.  That said, since going Gluten and Dairy free, everything has been fine for quite some time, I have found therefore that good food choices have a positive impact on my health, and poor choices have negative long-term effects, particularly when it comes to Sugar.  I am unfortunately one of the many people that have found diet impacts my body, causing many unpleasant lichen planus problems.

       

    • Guppy007
      Guppy007 BobTheBear

      Posted

      Glad to hear things sound better for you.  With regard to going Gluten free, I would say try it for a month, see how you get on, see how you feel, there is no point in stopping foods you enjoy if they are not detrimental to your health, but you have to do it properly, no half measures!! that is exactly what I did, and I found that I felt so much better, that I simply never wanted to go back to eating Gluten.  If you look online you will find lots of information out there that will help you with regards to what foods contain Gluten.  Remember though that sometimes people have problems with Dairy, but are not aware of it, and so if you find you are okay with Gluten I would then suggest cutting out Dairy for a month to see how you are without it...I'm not a doc, these are just suggestions...

  • kathryn07219
    kathryn07219 BobTheBear

    Posted

    Hi Bob,

    Re. your holiday in the sun (lucky man!), I would not advise you to expose the affected skin to the sun.  I did ask my dermatologist the same question and he advised covering up.  The reason being that LP and LS obviously cause changes to the skin surface and, as we know, when the skin changes it becomes more susceptible to damage.  I wouldn't recommend risking sun burn to unstable skin cells.   Whatever you decide, take the opportunity to relax and destress.

     

  • BobTheBear
    BobTheBear

    Posted

    Hi Everyone,

    Back from my week away and I must say the rashes seem slightly better.  They seem less pronounced and flatter.

    So what was different in 1 week away, what did I do differently and now I need to analyse this!

    - Exposed myself to the sun every day, sometimes sunbathing, other times just walking about.  Lots of factor 30 applied over my rash area's on legs and arms.

    - Didnt drink any ale/beer, just stuck to vodka and gin, plus lots of Ouzo (yes I was in Greece!   Did drink a lot of it every night though, didnt hold back!

    - No work, no stress, just enjoying myself.

    - Ate loads, everything included.  Was on a all inclusive and the food was amazing, so couldnt resist.  Soups, main courses, puddings - but only put on a couple of pounds!

    - Went in the pool/sea every day.

    I wonder if the suncream had any affect?

     

    • Guppy007
      Guppy007 BobTheBear

      Posted

      Hi, It could be that your skin liked the sun (vitamin D) and the salt water in the ocean, and the sunscreen! and it could be that your body does not like yeast, which is in beer, and it could also be that your body just totally relaxed.  I think its probably all of those things, but it might be an idea to not have beer for a while to see it you have a problem with that, and to take vitamin D.
  • BobTheBear
    BobTheBear

    Posted

    Guppy,

    Yes it could be any of those, think I'll stick to G&T's for a while and see if Beer is an issue.  Hope it's not though LOL

    Bought some D3 a little while ago, will give them a regular go I think.  What doses have people who have tried this used?  I have 120 x 1000iu tablets

    • Guppy007
      Guppy007 BobTheBear

      Posted

      I take 5000iu Vitamin D, but not every day, usually every other day.  Did you know that tins of beer are bad for you simply because they are not BPA free? the tin leeches into the beer, causing all sorts of health problems, and its serious!! and so if you find yourself wanting a beer why not buy the bottles instead.
  • BobTheBear
    BobTheBear

    Posted

    Guppy,

    I'm a bottle of Ale man, rarely drink a can.  What is BPA?

    • Guppy007
      Guppy007 BobTheBear

      Posted

      BPA is a toxic chemical that can leach into foods from the lacquer lining of cans and from other food containers and bottles made from certain plastics. In 2010, a CHOICE test found BPA in a wide range of canned foods – including baby foods – at levels that many experts believe to be harmful...many companies are aware of this problem, but it is too expensive to change to "friendly tins"  

      As usual its all about money, whilst people continue to get sick.

  • BobTheBear
    BobTheBear

    Posted

    So I'm trying Gluton free now and have been for the last 3-weeks.

    How long before any affect is noticed?

    It's not really an issue being Gluten free, many foods you cant eat of course, but many you still can.  Beer/Ale is off limits, but Cider is still on the menu, along with G&T's and Red Wine - happy days.

    So have I seen any difference?  Lost 7lb, so thats good LOL.  Skin seems slightly better, less heavy on the skin bumps.  But still new minow break outs occurring, so it havent cured it at all.  But it's not radically different, or worse???

    • Guppy007
      Guppy007 BobTheBear

      Posted

      Good for you! I drink GF beer, and very nice it is too!  

       After a month, why not try having a couple of slices of toast for breakfast, with maybe pasta for lunch and see how you feel.  If you feel terrible then you will have your answer, that Gluten is not for you!  but if you feel great then there is no need to continue being GF, unless you are feeling so much better that you want to.  

  • BobTheBear
    BobTheBear

    Posted

    Quite enjoy Gluten free actually LOL

    So Dairy Free next???

    • Guppy007
      Guppy007 BobTheBear

      Posted

      I am Dairy free, and I am sad that I cannot have it, as apart from being delicious, Dairy contains a lot of necessary nutrients which our body needs.  That being said, in your shoes, I would wait until  you have finished your GF experiment, before going Dairy free, as first you really do need to know if your body does not like Gluten, and the testing of bread after a month will most definitely let you know one way or the other!!  Let us know how you get on, there are many products out now that are lactose free, and home made Almond milk is beyond delicious!!
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