Lichen Planus

Hi Tracey,

I was told by the Dermatologist that Lansoprazole was the cause of LP. I have started taking them again because they work well for my Hiatus Hernia. I will also keep an eye on the rash and if it gets worse will have to stop them altogether.

I was diagnosed with Sub- Clinical Hypothyroid 2 years ago. I read online a couple of months ago,about a lady who had LP since she was 13 years old. She had the rash for 18 months at a time and it would come back again in 18 months. She had her first child at 30 and was diagnosed soon after with Hypothyroid. She said when she was on the right dose the LP disappeared altogether, and has not had any sign of LP for over 10 years.

I am only on a low dose of Thyroxine, but I don't think it is the right dose for me. I can't be sure, but I wonder if this is the reason I got LP through my dose being too low!

Hope you find answers soon!

Merryl

Hello friends! It has been a long summer, and the nice fall weather is such a treat. Wanted to give you an update. I had my third and final cortisone shot at the end of August, and did not need the Sept. one. In addition, my light therapy is down from three times a week to once a week. Incredible improvement! My feet and arms still have quite a few brownish-red spots, but they are healed and are not blistered or "bumpy." Dr. said feet take the longest to heal. If this is as good as it gets, I'm happy! No new spots, and that's very good news. Please let me know if you want more information on my treatment. Wishing you all a healing, peaceful time.

Well........ An update from my last post (found on page two).

What a summer!!! I had my colonoscopy and had two polyps removed. Biopsies showed no pre cancerous cells, no inflammatory bowel decease, just a nice healthy bowel for someone of my age.

I found the procedure quite uncomfortable, actually it was PAINFUL!

Less than two weeks later I was admitted to hospital with a large abdominal abcsess caused by a perforated bowel!! Not a pleasant experience at all. A perforation during colonoscopy is VERY RARE, and I will need another in five years time but I will not be put off by this experience.

LS and LP are still there but under control. My feet have healed thanks to the predisalone and I'm on the mend after my hospital stay.

Hope everyone is coping x

Sorry Merryl for not replying to your earlier question about LP in the mouth. I had it only lightly, as big dark red patches inside my cheeks, which burned.

I was able to control it by avoiding citrus, tomatoes, strawberries and hot drinks.

It went after a year and a half or two years. just get a touch of burning on the odd occasion now, usually from eating tomatoes.

I moved on to bigger things after my LP cleared up. Lichen Sclerosus.

Hi Kim,

Sorry to hear about the perforated bowel, it sounds horrendous! You sound like a very positive sort of person and I hope you recover quickly.

I am thinking seriously of having stem cell treatment, once I can get hold of the famous man in question, who is in Genoa, Italy.

Hi Joodie,

Join the club!! But I still have LP as well as LS!

Take care both of you xx

Horses, is your LP still active? how long have you had it? Mine has stopped but just some residual little lumpy spots on scalp and spine and a crumbly thumbnail. Not a problem really but its the LS which is worse as you know. Some have it much worse than I from the sound of it so I'm counting my blessings, but not getting complacent.

Kim, I am sure they are going to be very careful with you next time. Hope so. You're brave.

Hi Joodie,

To tell you the truth, I am not sure where LP starts and LS ends. I just know that I am really fed up with this situation and if stem cell treatment is the answer, I will try and find the courage to go for it!! I still cannot examine myself with a mirror, so just go by what the dermo tells me regularly and how I am feeling. The burning is starting, so I can presume it is backj .....

xx

Hi Horses,I have seen what stem cell patients have said and it's good. Some had several treatments. Italy, yes. You sound as if it's getting you down so if you can afford it, go for it. Apparently you get treated really well, so nothing to fear. It seems to be better for some than others but I've not heard anybody say bad about it.

I have got mine under control just now , touch wood, using clobetasol twice a week, occasional emu oil, a daily sitz bath with lukewarm water, and a dilator. The first few years were the worst and out of these the first few months were the worst.

Funny but even after all these years having it, I'm still amazed that such an affliction exists! If you go for stem cell treatment go with my good wishes. J.

Thank you for your kind message, Joodie. I am still dithering, as for me it is a very big step and there are no guarantees that stem cell treatment will work first time. I seem to change my mind over this every few minutes and did in fact send an email, but apparently it was not the right address - which I now have!! I will probably decide in the next couple of weeks.

W xxx

It is a big step, yes. I think if we knew something was definitely going to cure us, we would be lining up for it..

If I had a lot of money to spare and was younger and still had a partner, I'd have a try.

Take care

J xx

Hi Joodie,

That is exactly how I feel. "If I were younger....". However, I have a husband and feel so guilty all the time. I just cannot seem to decide.... Also, there are no guarantees that it will work first time and the idea of shuffling off to Italy two or three times is not appealing!

xx

Hi I have LP and it's all over my body. My hair is getting thin and I can't stop itching. The bumps have my arms legs butt stomach covered. I really don't know what to do. Although I have just finished detoxing my body I Fo not see any new spots but the old ones won't go away. Any suggestions?

Hi all...am a brand new member as was diagnosed about 7 months ago...and whilst friends and family around me sympathise, no one really understands how depressing LP is. So thought I'd give you fellow spotty itchy ones a whirl...not necessarily for advice (although any miracle cures will be gratefully received) just speaking with fellow sufferers who understand would be wonderful!

I was diagnosed only a few months ago after being treated for persistant thrush (that I'd been lucky enough to never have before, so really didn't know what to expect of the treatment) after several miserable weeks and when the /itch starting appearing almost everywhere...groin, anus, lower back, behind knees, stomach, hips, belly button, under breasts, armpits, mouth. My GP suggested I pay privately to see a specialist dermatologist...at this point I was just desperate to get fixed, free from the itch and to stop myself googling and diagnosing myself with terminal illnesses on a weekly basis. The specialist was lovely and after examining me from top to toe diagnosed me with LP. I use Aqueous Cream to wash and moisturise with, take anti-histhamine daily, use two different strength steriod creams...the milder one for my 'delicate' areas and the stronger one I just chased round the spots that appeared on my body. You can tell where the steriod cream has worked as the spots are no longer raised and itchy...however have been left with a darker pigment on the skin (which I absolutely hate)...however after me thinking I was lucky enough to have stopped getting new bits, I have since developed it on my wrists, soles of feet, ankles and just in the last week my lower legs...

I'm out of ideas after exhausting myself with research, have tried everything suggested, various vitamins to boost immune system, including Olive Leaf. Occasional burst of a sunbed for boost of Vitamin D, I have for the last 2 months been on a strict 'clean' diet..nothing processed, no dairy, no carbs, no bad fats, no alcohol (okay, maybe not so much over xmas...) but cant really say that anything has helped. The dermatoligist suggested that stress is the key factor but can honestly say I'm not a stressed out person...no more than the typical mother juggling kids, home, work etc...but thought I took all that in my stride.

I really try not to feel sorry for myself...at the end of the day, this is not going to kill me, people everyday get diagnosed with far worse. But it's hard when you wake yourself up scratching then have to look at your poor spotty, marked skin in the mirror which was only just a few months ago...not perfect by any means...but not in need of covering up!

I live for the day when I notice that it just stops and the marks go away, but wonder if I'm just kidding myself...does that ever happen to anyone?

Hi Fiona,

All my sympathy goes out to you, but I think I am right in saying that LP can be cured? At least, this is what I understand, although I never know the difference between LP and LS. I have both - lucky me!! It sounds like you are young, at least a lot younger than me, but the good thing is you are not a stressed person, as often trauma seems to make things worse!

Like you, I have been reading everything I can on the subject and have completely given up oranges, my favourite food next to squid!! Anything acid seems to really aggravate the situation and I love the occasional glass of wine, although even that isn't such a temptation these days.

I actually rushed out and bought new cookery books, thinking this might help things but I am beginning to realise that you just have to live with it.

My biggest fear is that I will get Altzeimers (excuse spelling!!) or, even worse, paralysed and no-one will know about THE ITCH!!! It is all such a procedure, washing, moisturising, steroid cream, etc. and it is not as if you can just skip a day!!

Sorry, this was supposed to be cheering you up! Pathetic attempt, but just to let you know I am thinking of you and you are definitely not alone. This is a wonderful site and everyone is very kind and supportive.

Bye for now,

Horses

Hi you guys.

horses you echo my thoughts re the dementia. I have pondered having to jump off a cliff if I am aware of it before it gets too bad.

A real worry, but most people don't get alzheimers and we were unlucky enough to get this LS and LP so that is surely our share of bad luck?!

Fiona, we are all different but in case it gives you hope ( don't count on it though) my LP having travelled all over my body, burned itself out more or less out around 2 years from start. Residual occasional little things but inactive.

However when you get it "down there" it has a reputation of moving in permanently.LS anyway- not sure about LP. they are different diseases but the treatment is the same..

Really there is no cure only treatments, many of which we pass around amongst ourselves, and only conjecture re the causes.

.As time goes by you do learn to manage it your own best way too . You sound a positive person and that is the very best asset to have in all of this

Joodie xx