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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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  • BobTheBear
    BobTheBear

    Posted

    Gluten free bread I really like, dont like the price though, so am looking into making my own.

    So some 'ordinary' bread would test me out after a month then?  Not sure what difference it would make yet of course.

    Yes Dairy free wouldnt be good, no cheese, no yoghurt and nothing with milk in it - which is a lot of products.

    • Guppy007
      Guppy007 BobTheBear

      Posted

      I buy a ready made GF bread mix online, and then I throw in an egg and its very good.  I wanted to make my own, but after reading about all the different types of flours you needed I quickly lost interest! cheesygrin

      If you have rigidly followed  a GF lifestyle for a month, and if your body is intolerant to Gluten, then you would most likely feel quite ill after eating normal bread, its not a perfect test, but its a test that many people do use.

  • BobTheBear
    BobTheBear

    Posted

    Which bread mix do you buy please?  Just looked online at a few, but a recomendation is always better

    Ta

    • Guppy007
      Guppy007 BobTheBear

      Posted

      I buy Pamelas Products Gluten Free Bread Mix, its quick, easy, and really good.
  • BobTheBear
    BobTheBear

    Posted

    My rash on my legs is definitly getting less scratchy and perhaps looks a little bit better.  Much the same on my arms.

    I'll stick with the Gluten free diet for a while yet and see if improvements get better

  • jana34029
    jana34029 BobTheBear

    Posted

    My doctor put me on an anti-inflammatory diet.  I had never heard of it but it does make a difference!
    • BobTheBear
      BobTheBear jana34029

      Posted

      What does an anti inflamatory diet consist of Jana? 

      What foods to avoid, or consume please?

      Thanks

    • jana34029
      jana34029 BobTheBear

      Posted

      I've included a link but it is being sent to moderation.  I'm sure it will be approved.  google anti-inflammatory diet

      it will get you to info.

    • ElleF
      ElleF BobTheBear

      Posted

      Brown Rice Diet is anti-inflammatory.

      NO:

      gluten

      dairy

      sugar (yes it exists in food, but no added sugar)

      corn

      mushrooms

      tomatoes

      alcohol

      dried fruit

      OK:

      brown rice

      kamut

      quinoa

      chicken

      cold water fish

      tofu

      tempeh

      chickpeas

      lentils

      beans 

      Be strict or it won't work. You then stabilize and reintroduce 1 item at a time to see if you get a reaction. As Jana says, you can google it for more information. Above is the basic diet my doctor gave me. 

      I also use an app to track my symptoms and what I've done (or not) to look for a corelation.

       

    • jana34029
      jana34029 ElleF

      Posted

      with my diet, I'm allowed red wine.  I'm allowed certain fruits, etc.  Yours sounds like something you really couldn't live with.  Beef only every once in a while.  Chicken needs to be organic.  no hormones, no preservatives.  All veggies and fruit should be organic.  The only salmon you should eat is Wild Alaskan Sockeye.  because it is the Omega 3 you want.  NOT Omega 6 oils....  there is a pyramid you can view online.  wish they would allow the link in my original post!  Hope that helps!
    • ElleF
      ElleF jana34029

      Posted

      HI Jana, it is doable if one wants to see what bothers them and what doesn't. It isn't intended to be permanently so sparse, unless one really likes it. I forgot to add that most vegetables, fruit and all gluten free grains are okay! There is more to the diet that I've spelled out. And yes, all the food should be organic if possible and not frozen or canned.

      The diet is essentially brown rice with bothersome groups of foods taken out (night shades, gluten, eggs etc) until the system has calmed down and is not being irritated. The foods that are allowed are generally not problematic for people. After being on the diet for a while, one's system should get calmed down and irritant/inflammation free. Slowly foods are reintroduced on group at a time. For example for 3 days, 2 of 3 meals have dairy in them. If you don't have a reaction (skin stays calm, no headaches, no bloating etc.) dairy is allowed in the diet. The following week another food group is introduced. By removing a lot of things from your system at once you can know when you reintroduce something that it is the culprit. If you are eating a bit of things here and there, you can never be sure what it is that's causing symptoms (if it is a food). I have two autoimmune conditions and so it can be difficult to track what is giving what part of the body grief. I was trying to do it that way and wasn't making headway. Knowing that staying on the diet gives me answers makes it easy to continue with it. I'm still in progress with it and I hope that red wine will be added back in!

  • wendy39173
    wendy39173 BobTheBear

    Posted

    Hi Bob,

    Well i have been suffering with Lichen Planus for 36 years and have tried every new fad that comes along.

    2 days ago my partner (having previously bought the whole chemist) came back with something i have never tried before, guess what? Good old CALAMINE LOTION!!!! Unbelievable. Routine at night : warm bath, nothing too oily as tempting as it is. Bit of johnsons baby bath maybe, then lathered in calamine which dries nicely so you are not sticking to the sheets. Then tape those soft cotton moisturising cloves on to my hands so cant scratch in the night. Please give it a go.

    Wendy

  • BobTheBear
    BobTheBear

    Posted

    Hi all,

    Sorry it's been a while since I posted and thought I'd updated you all now on my progress.

    Dr referred me to a skin specialist, but that was going to be a 26-week wait and the itching was driving me mad.  So went to see a consultatnt myself, really good knowledgeable guy.

    He confirmed it was LP and my lower legs and forearms had it badly.  He said the steriod cream given to me by my doctor wasnt strong enough and he recomended I do the following

    - Apply stronger Dermovate cream thickly in the morning to my lower legs, then wrap my legs in Viscopaste bandages, followed by tubifast elasticated bandage.  The Visco paste bandage is a Zinc paste bandage, nice and cool when putting it on.  Legs were warm later in the day due to having all this on my legs in hot weather.

    This was to remain on for 24-hours, then changed daily and done for a month.  I did this every day, although at weekends I didnt as it was hot weather and I was wearing shorts.  Bandaged legs and shorts dont go well together!

    With my forearms he said to put the Dermovate cream on twice daily.

    This cleared up the itching and the whole rash area calmed right down, which was great.  The affected skin is still scarred, but hey ho, thats better than it itching like mad.

    I also had a large lump on my lower right leg, which he took a piece out and had a biopsy done on it.  It turned out to be a squamous cell carcinoma, which he said was cancerous, but not one that spreads.  So next week he is removing the rest of the lump which will leave me with a 2-3" scar.  Happy with that as it will be gone, he says I'll need a check up in 6-months.

    So at the moment I get little flare ups on my arms and legs and inside my inner thighs and I treat with Dermovate cream.  I dont think it will go away ever, but at least I feel it is controlled for now.    

    • Guppy007
      Guppy007 BobTheBear

      Posted

      That is good to hear!!!...it is so nice to hear when someone has had positive results from their doc, it sounds like you have found someone that knows his stuff!! 
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