Lichen Planus

[louda]

Does anyone also suffer with Lichen Planus along with the fibro doctors are changing me from amitriptyline to nortrypyline really struggling to get any sleep was on 75mg of amy down to 20mg of the nortrypyline how the hell can that be right any suggestion would be welcome I'm in uk not the well informed USA ....x

[Zumbaqueen]

My advice steer well clear of nortriptoline they gave me it and I was seeing things and hearing voices , it did nothing for my pain or my sleep, please look very carefully into it x

[TerryT1]

Hi,

Yes, I have had Lichen Planus for over 25 years now. I don't take amitriptyline or nortrypyline, so I can't really advise on that. Are you getting a topical steroid cream for it? For me, it has really helped with the itching and flattening the rash.

When I went to the skin clinic, they said no one really knows what causes it, but that anything that works on the central nervous system, like the Seroxat (Paroextine ) I took can cause it.

I stopped the antidepressants as soon as I possibly could because of the side-effects like LP. It was 4 months before it started dying down again. Yet it happened in only two weeks of starting taking the Seroxat. When I had to start taking them again, the LP was having a major flare-up within a week this time and took 4 months to die down again once I stopped.

I was prescribed oral steroids originally, but they have lots of nasty problems like weight gain and in my case, I was getting angry a lot (the infamous 'roid rage'), so I went on the cream instead.

I wish I could help more, the only think I can thnk of is to ask the doc if there wasn't perhaps an alternative that was less likely to cause LP and just keep fighting every spot with steroid cream until hopefully you can safely stop the medication that is causing it.

I wish you well!

[louda in reply to TerryT1]

Thankyou for replying yes I now have cream which has really helped is yours limited to your skin only? I have it in my mouth,scalp and vaginal area up to now they do take turns to flare I just hope they don't all plan a party at the same time!! I take quite a few meds they are looking at them all one at a time, with fibro,lichens and diabetes life can be very trying at times lol...x

[TerryT1 in reply to louda]

Hi Louda,

Yes, it is only on my skin, but lower legs, hands forearms and all over my back when it flares. I can't think why it gets those areas on me.

I'm really sorry, you seem to have it worse than me and I know how bad I get with a flare up. unless you have had it yourself, you can't possibly describe the intensity of the itching to someone can you? It must be really miserable when two or more of them flare up for you. I am so sorry.

[louda in reply to TerryT1]

Omg the itching got so bad one night I ended up in tears this is my first flare of my skin its on my fore arm it looks so bad I don't like going out uncovered but with this hot weather I can't wear long sleeves but on the cream it does say to avoid the sun light so I guess I will just stay in as I am writing this my scalp has decided to become very itchy I hope it's just because I'm very warm ( I don't tolerate heat very well) and not the start of a flare my scalp has only just recovered from a flare oh the joys!! Thanks for listening....x

[TerryT1 in reply to louda]

Yeah, I had to wear white gloves, only for someone with a loud mouth to shout at me, saying I was a criminal and I was trying to avoid leaving fingerprints!

I'm ashamed to say that was just too much on top of everything else and so I did something that I'm not particularly proud of, but it is funny I suppose n relflection? I went over to them, took the glove off and threatened to touch them! They didn't know what it was, or that it's not infectious or anything like that. They just saw this rash with little white 'pimples' on the skin and probably thought I had the plague or something! They ran back into their house and I never saw them again thankfully.

You really do have my sympathy, as I can't live without vinegar on everything. I am so very sorry you have them in your mouth. Even though I have LP (and oddly enough one of the little blighters has come up on my hand since I first replied to you-Maybe it knew it was being talked about?), i cannot imagine the misery you must be enduring. I wish you well.

[louda in reply to TerryT1]

Thankyou...x

[Greenpeace]

Hi louda ,

sorry to read that you have Lichen Planus. It is rather a nasty skin condition which I'm sure you could do without along with your Fibro. It is not a symptom of Fibro, but a Dermatological condition in its own right. I hope that you are getting the proper treatment for it in order to keep it under control.

I was wondering why your doctors are changing you from Amitriptyline to Nortriptyline? Is it perhaps that you have become used to Amitriptyline and they are no longer working? They are both Trycylic Antidepressants, and can work well in giving a good nights sleep. Not everyone can get on with them, but if you can, they can be very effective in giving you a good nights sleep, and therefore it also relieves our pain.

Everyone is different in their reactions to meds, and what works for one, is no good for another. I would imagine if you got on OK with Amitriptyline, you will also get on well with Nortriptyline.

As for the different dosage? I can only presume that your Drs know what they are doing. Maybe they are giving you a smaller dose to start, in order to let the Amitriptyline out of your system. If you find that they are not working, get back on to them and tell them.

I hope you get sorted out with your meds, and please keep us posted as to how you get on. You can get more info on Lichen Planus on the NHS Choices Web Site.

Good luck.

GP. 😊😊

[louda in reply to Greenpeace]

Thankyou for your reply my lichen planus is also in my mouth and causing me to have great difficulty eating I can't have anything acidic,spicy,dry even soft bread the edges feel like I am chewing barbed wire the thought is that a lot of my medication can cause dry mouth so they are changing my meds one at a time to try and help the oral lichen it doesn't help that I am also diabetic.......so what with fibro, lichens planus ( affecting my skin,mouth scalp and my lady bits lol) along with diabetes life certainly is not boring!! Lol....x

[Elkie]

You are all so well informed, Zumbaqueen and TerryT1. The trouble is that doctors, consultants and others feel they have to give us something, that is that job, but much of the stuff they prescribe does more harm than good, l try and do as much research into what l am prescribed and decide for myself whether l take it. As they say the cure can be worse than the disease. Sometimes the only winners are the drug companies, BigPharma. Wishing you all peace and rest.

[TerryT1 in reply to Elkie]

When I am so depressed, I willingly take the antidepressants, because for all they are a nightmare, they are still not as bad as the depression they replace some of. I don't know what else to do though Elkie?

[Elkie in reply to TerryT1]

TerryTl, really feel for you. At my lowest point l try and think of all the positives in my life. Even one is good. How about getting out even if only the garden and do some work, there is something about being in an open space that opens the mind and calms. If no garden , there should be a park close by? Go find a book in the library. The librarian will help you find you whatever you want. Finally, if you can bear it, Try and think about those who are suffering a bit more than you. Please don't be offended, these are tricks l use and they sometimes do work.

Thinking about you and wishing you better. Take care.

[TheAuthor]

Hi louda

I have never suffered with Lichen Planus. However, the NHS Choices link that I have pasted for you below gives you a comprehensive listing of the medications that are used in its treatment:

nhs.uk/Conditions/Lichen-pl...

As for the Nortriptyline, this is almost the same as Amitriptyline but without the sedative component so it only has the other ingredients that help you to sleep. I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[kimbles]

I have had Lichen Planus twice since i was in my teens. I have mostly come through it now. But it doesn't take much for the itchiness and dryness to come back. At the height of it my GP gave me steroid cream and a very strong antihistamine to reduce the itching. Are you using the antihistamines. They are called Telfast 180mg. these were good.

Try not to use any soap or perfume based soaps etc. as this will dry the skin and make it worse. I The doctor should have given you a wash Dermol 500 lotion and after cream- Liquid paraffin and Isopropyl myistate gel /pump 500 grams. I'm so sorry you have this, i know i felt like i was going insane at times. Particularly as the constant bleeding legs and arms and stares from people.

I found change of temperature really hard to manage. my feet and hands are naturally very hot so i got a hot water bottle and filled it with really cold water this was if the only thing that calms the itching down and soreness. If you haven't got one try a flannel. Some days i looked like a mummy!!

I really wish you well.

Please keep talking/writing asking questions. Everyone on this site is so supportive.

[louda in reply to kimbles]

Thanks for replying I have not been able to use soap for nearly a year I have to use zero cream it's also a wash and it stinks of tar! I so long to smell feminine with nice soaps perfumes hairspray ....never mind on the plus side I suppose I'm saving money.....x

[Denzalmac]

Im not sure it is available in US, you would have to research that but i believe it is. LDN, Low dose Naltrexone…. works like a miracle with some peeps and no side effects x

[SassiLouie]

My doctos can't seem to determine if it's a lichen sclerosus or lichen planus thing. When it crinkles down...at random..and at a time they cannot observe...one says it sclerosus. Ok...so I think they are very similar and connected. Everyone seems to have different levels of pain or itching with similar symptoms.

Anyway..here is what has worked for me. The Amitrypitaline I used half of a 25 mg pill at night just to help stop itching and get to sleep only on bad nights. I go easy on any drugs..use the lowest possible dosage...I do not want to become desensitized. Because when you do..NOTHING WORKS..then you are screwed.

SO now...Good times..I also have fibromyalgia hashimotos..so I also take Lyrica once in a while to help with sleep. I alternate the two..some weeks I can go days without taking either.

Warm baths help. Sweating and heat does not.

The steroids creams seem to work for a few months...but you eventually have to stop them because your skin will thin out.

I finally consulted a dermatologist..because I realized gynos were either saying it's yeast or something else...when YOU KNOW ITS NOT! I asked the dermatologist.... what her gut instict on this is ... she was afriad to give a diagnosis on it...BUT her instinct on what to try first was brilliant. PROTOPIC. It stopped the shriveling and helped with itching within 2-3 days. You don't have to worry with it like you do with steroids...you can use it every time you get out of the shower or bath. Maybe twice a day on the first week of use.

After a few weeks I only need to use it once a week now.

I have had ONE bad flare in two years..and overall..the little ones are much less.

I find that the itching is worse after my largest meal of the day...approx 5 -6 hours after eating.

When I eat the same simple foods every day...I itch much less or not at all. You would think allergy....but why is the itching in one area??? Is it salt? Sugar..I don't know..but I cut a lot of both out. It got better...much less flare ups. I might get a small one every few months now..if that.

It's been two years now on Protopic. One major flare up...3 or 4 minor. That's about it.

Dermatologists know skin..and basically your vulva has nothign to do with your uterus or reproduction except help keeping dirt and bacterai out of your body. That just sort of hit me one day as I kept going to gynos..with the same templated experience. I had another mole removal issues and kindly asker her to take a look. It was totally the right call. SKIN EXPERTS!!! look into it.You should consider seeing a really good dermatologist if you've been to a lot of gynos. Mostly they want to just treat yeast infections and make money off lab bills or pharmaceutical. They are not into actually treating skin diseases. Think about that for a minute.

And don't EVER EVER EVER EVER EVER let them take a biopsy until you've consulted a dermatologist. Most likely they wont' find anything AND It's one of the most god awful painful things I have ever had done. The shots are just like torture. I would rather be in a car accident. I would've confessed to anything at that point.

I hope my experience helped anyone here. Having this is just a really messed up way of living.

[louda in reply to SassiLouie]

I have just been given protopic it's really made a difference !!! Thank god it's eased the itching almost straight away what with fibro,diabetes now this lichen planus I think I have more than my share of stressful illness!!!......x

[SassiLouie]

I can't believe you said I have fibro and diabetes!!! I have fibro also. I was borderline and was put on metformin. The PROTOPIC also worked for me. You might have one flare up now and then...but they are month apart now for me.

[sharchi]

I have lichen planus in my mouth. I have to gargle daily with clobetasol. It is supposed to come in an oral liqued. However, I live in Mexico and have not been able to find the oral. My specialist has me using the lotion diluted now 1 to 3. The first month it was 1 to 9. I have been on trazodone for sleep and pain. Also had problems getting it in Mexico a few years back. I also take Duloxetin for depression. I was also given lithium in a very small dose. Right now none of it in Mexico, go figure. I've been taking these 3 for 27 years since first diagnosed. Later when I started pealing off my skin because of the peripheral neuropathy, gabapentin was added. I feared what pain levels and problems I would have as I aged (72). I have been pleasantly surprised. I seem to have fewer symptoms except for the balance issues which have gotten worse. I work in the garden and walk the dogs so the balance issue can be treacherous. So there may be cause for optimism as you age.