Topic: Pityriasis Lichenoides Chronica

[candidlyarviann]

I used to take doxycycline and prednisone. Right now, I'm taking methotrexate, folic acid, and glutathione. They're okay but I still get some bumps every 2 weeks. It's annnoying, really.

[zeeandcee]

Wow they're pretty hardcore medication. Is there a reason why you're taking methotrexate and glutathione?

Antibiotics doesn't work for you?

[candidlyarviann]

Yeah, they are. Well methotrexate is just like prednisone. They're both strong steroid with anti inflammatory component. I had liver test first because the drug is not good for the liver. Glutathione however has an antioxidant, plus it can lighten scars. And nope, antibiotics does nto work for me.

[jamesroy23]

Hi I also have PLC for about a year now, tried creams, antibiotics, and UV theraphy(worked for a few weeks but relapsed). Now My doctor is planning on putting me on methrotrexate. For those who have taken Bromelain? any good results so far? I am planning on buying the bromelain before going on methrotrexate.

[hxtc2]

Hi all,
just to keep things posted here.. i've been having Pityriasis Lichenoides Chronica for almost 2 and a half years now however never managed a biopsy because the specialist could conduct one due to the lack of active red spots.
Mine are mostly brown and scaly, leave some hyperpigmented marks but now more so hypopigmented.

I gave up on fixing this for a while but recently developed lots of scaly white patches with loss of colour. They're pretty big and span most on my legs but vary throughout my body. I decided to go back to my specialist and this time he conducted a biopsy.
Much to my surprise it came back as Mycosis Fungoides, a very early stage of lymphoma.

So I'll be starting light treatments (PUVA) soon, thrice a week for 2 months, then tapering down to twice and then once a week.

No idea if this is linked to pityriasis lichenoides chronica but it seems that there are a couple of people who have had PLC and it's led to this.

Fingers crossed all will be fine in 6 months. Hope everyone is well

[PLCskinPA]

Hello there!
     I've lurked on this forum for almost a decade. I was diagnosed with PLC (via biopsy) in 2008 after about a year of jumping from dermatologist to dermatologist trying to find someone who could recognize my skin condition. I wont go too in depth with my experiences the first few years of having PLC... it robbed me of my self esteem and made it feel like it was impossible to live the life of a normal 20-something. I believe my PLC manifested after a bad staph infection the summer after my freshman year at college. I struggled with the flakey, itchy spots for about 3 years. I've tried the antibiotics, bromelain, steroid creams, and UV therapy (probably helped the most out of everything my doctors suggested), but nothing made it go away.
     
     What I'm going to say may seem far fetched to some of you, and this is only based on my personal experience... but i've been diligent in my observations.
Back in 2007-2008 (when I was afflicted and then diagnosed) I was attending art school in Boston, and I smoked a bit of marijuana (I found that it helped with my anxiety and allowed me to let loose and think more creatively... this will come in to play in a minute). By late 2010 I had given up on the majority of doctor-suggested treatments as I found they didnt help much (with the exception of uv therapy... that helped but the effects were very temporary). In the early fall of 2011 I went on a weekend trip with a few friends and we smoked A LOT of marijuana... within a few weeks to a month, I noticed that I had no new PLC spots. Within a few months I noticed that it had all but gone away (mind you I was a light habitual smoker through all of this so I was still ingesting small but daily doses of marijuana).
    I had been symptom-free for almost 5 years!

    This spring I started a new degree in STEM and made a personal decision to not smoke pot because it interfered with my ability to learn new mathematics at an accelarated rate. Slowly, I've noticed my PLC creeping back. It's NOWHERE near as bad as it used to be, but it's there. I haven't changed my meds or diet, the only thing that's changed is that I no longer smoke marijuana.
     I don't know if it was just the stress-relieving qualities of marijuana that suppressed my symptoms, or if it was something more direct... but I know that, for me, it was a GAME CHANGER.
I'm more than aware that it's illegal, I know that smoking in general is bad, I know that a lot of the people on this board have children that are affected... I just wanted to share my experience in the off chance that this info may help someone here.
    I really hope this isn't off-putting to many of you here. When I stumbled on this forum many years ago, I was in a dark place of fear and sadness (from my diagnosis). However, it helped to know that I wasn't the only person dealing with these feelings, these frustrations, these damned spots.

Thank you all for sharing your stories, I hope it's ok if I share mine.
-L

[mark24]

Im not sure if I have this disorder but I think I may.

I've looked at a lot of the picture of people with PLC (on here as well) and my marks are much less severe then anything I've seen (actually seen 1 photo that resembles it and you can barely tell by the marks). I've had my symptoms for about 9 days and am going to see a dermatologist tomorrow! I already went to one walk-in doctor and he said I had pityriasis rosacea of the most mild form and that it would go away...I ended up researching the condition and found my symptoms to be more closely related to PLC (have no herald's patch, itching or flaking spots). So I've concluded that this is what I possibly have.

It started when I woke up last week and found my side torso, side arms and inner thighs covered with little red dots. Kind of like bug bites but most are flat and some are raised.  No itchiness at all but can definitely feel them with my clothing on. After spending time on the internet, I was shocked to know this is what I may have. I'm a 23 year old male and I do some modelling for a fairly big company in New York so this really hit me hard psychologically. I mostly face model but its definitely scary to have something like this on my body. For the last few days, I've basically been a mental mess and have had some pretty catastrophic thoughts: "girls will never like me with this condition" "I look like a monster" "Why do I have this." I've calmed down a bit but i'm still worried and scared.

The good part is that the spots on my torso haven't really spread over the last 9 days and my legs have been pretty much the same as well. No itching or anything has occurred. Also, they aren't very noticeable unless its in a room with bright light. Cant really notice anything in darker or dim lights and the doctor who assessed me said it wasn't very noticeable unless up close. I've told my gf about the problem and am fairly nervous to get intimate with her as I'm afraid she may freak out by what she sees up close...

I've basically read this whole forum and every study on PLC in the last few days and am already trying bromelian (i'm actually eating one full pineapple a day even though most of the bromelaid is in the stem but there is still good quantities in the fruit --> I read two people on REDDIT that cleared there PLC by eating large amounts of pineapple for a few weeks), Zinx Oxide cream (heard this has helped some people a lot with pityriasis rosacea) and will possibly try tanning. Not looking to try meds as I've heard they are ineffective (except maybe erthyromycin) This will be my 3rd major health problem: had neurological symptoms for 2 years and epidiymytis for 1 year of a pretty severe form. Those cleared and now I may have PLC (guess I'll find out certain tomorrow for sure).

My favourite quote of all time is from Albert Ellis, one of the greatest psychologists of all time (who suffered from many health problems himself):

"I was born to be disabled, but I was also born to cope with disabling"

[Brenda_07]

Hi guys I'm Brenda i was diagnosed of PLC year 2013 i had may recent CBC result and i have lymphocytes level of 42 which the normal value is 40 may i ask if anyone here had their immunologist check up doesPLC really related to what i heared about the blood disease or lymphoma? I'm a bit worried

[PLC4ME]

Hi guys I'm Brenda i was diagnosed of PLC year 2013 i had may recent CBC result and i have lymphocytes level of 42 which the normal value is 40 may i ask if anyone here had their immunologist check up doesPLC really related to what i heared about the blood disease or lymphoma? I'm a bit worried

Hi Brenda,

And sorry to hear of your condition.. What did the specialist say about the high level? I believe the higher immune system would be quite normal as your bodies immunity has to work harder and create more immune cells.

I haven't logged on here since 2008 and so it's been almost 10 years. You can see my posts from page 8.. I had this PLC in 2005 for about 6 months and then I took tetracycline I think they were 500 mg tablets x2, 2 times daily. For a week now I have been getting more and more spots on my arms first of all and now on my shoulders and some on my neck and head and legs and feet. So I had to go to a compounding pharmacy to get them to make tetracycline because it's not available in Australia as a regulated prescription anymore. If you are taking it you need to stay out of the sun.

Another thing I recommend is taking cold showers, which prevents the flaring of the spots. The technique is to just cover yourself with soap and then wash yourself quickly within a minute. I am actually quite used to this because I have had dermatitis for more than a year on my hands but now it seems to be a bit better. I also get dry skin in general so I have to use soap free wash.

Otherwise make sure to get lots of sun as you need vitamin D along with vitamin B12. Thanks thinking of getting this supplement today actually. But it's probably better to get a full blood count so this level can be measured. If you live in a country like England or you have dark skin then vitamin D deficiency may be a problem.

I am almost under the belief that the cause of this disease is environmental. I messaged Shauna in 08 who was another member on here, because I was just reading old messages in my inbox, and I asked her if she had seen any small bugs or mites around her child's bed or clothes. And trying to remember why I asked that. Because strangely enough the bed Ive been sleeping in for the last 7 nights has been infested with these little bugs which actually suck your blood. I thought they were causing the spots as they are quite itchy and resemble mosquito bites, (only some itch). Anyway I let one of these bugs bite my hand this morning and it didn't produce a spot at all. So it's not the bite itself causing me spots but I think it's releasing a kind of bacteria in my blood. It's very aggressive and the fact the spots seem to accumulate in the same place on my body, (sometimes in a straight line), leads me to believe the skin reaction is local.

I will have to find my own dermatologist and get a referral, so that I can get a biopsy and determine what this actually is. The derm I had for my dermatitis was actually very high up however she recommended things like wearing cotton lined dishwashing gloves and cotton gloves to bed with the ointment. However these gloves were actually sustaining the dermatitis, so now I use disposable gloves.

Anyway I'm going to call this compounding pharmacy as soon as they are open so they hurry up with the tetracycline, otherwise I have a script for erythromycin. Will update here with the progress... and I'll upload a video or images with this little bug.

@mark24 I recommend giving the antibiotics a try as I believe they helped me when I had this skin condition 12 years ago.

[Admo415]

Hi -

My wonderful 21 month old daughter was recently diagnosed with PLC.

I was wondering if J has an update on her daughter - hoping there have been no further spots!

What has been the general trend for younger toddlers with PLC, our pediatric dermatologist seems to generally see it run its course in younger kids in a few years.

We are making sure she get sun every day (we luckily live in LA). We have been told she has a "medium" amount of spots.

Any stories from other parents would be greatly appreciated!

[khrid3]

Hello, I am 21 years old, male, from the Philippines. I would like to share my story again for those who are not able to back read from previous messages. I had PLC since 7 years old. red rashes which are not itchy appeared throughout my body (except for the face) and it was initially associated with a very high fever. Since i am still a child that time, i do not care about these patches on my skin but still it affected my life as a child since i was embarrassed to play outdoors and with games which require to play with shorts or with tshirt off. Anyway, I am now 21 years old and I am glad that I am now free from this disease, although sometimes one or two fresh and light red patches appear, i consider this to be a great blessing to be free from many marks and patches all throughout the body. I was diagnosed with this disease after 7 years , when i am 14 years old but i consider myself to be somehow free from this disease when i am 19 years old. Imagine the 12 years of suffering.

Enough for a long intro, here are some things that i have encountered throughout my experiences with this disease.

What I have done:
1) Took controlled costeroid medication (having higher doses then getting lower doses after some time) - This does not help
2) Took UVB phototherapy for around 50 sessions. (This do help but temporarily, it helps to make lesions to blacken and flatten but still, red marks still appear)
3) Applying triamcinolone cream. (This does not help also)

As a patient who experienced this for a long time and is somehow healed from this disease. These are the following things I would suggest to do and things i notice and observe about the disease.
1) This is an immune-system related disease. Observe whenever your stressed or have some kind of sickness even though it is just common cold, red patches all throughout your body is angry.
2) Staying late at night may cause your immune system to be weaker, hence, more onset of patches/lesions on skin.
3) The most important thing about this disease is make your IMMUNE SYSTEM STRONGER! Drink colostrum milk, drink vitamins or in my case I only took herbal medicine such as malunggay life oil (available in the philippines) which i really testify to be effective on making your immune system stronger. Don't rely much on antibiotics, etc which could give you temporary relief but does not attack the main problem of weak IMMUNE SYSTEM.
4)Pray! ask our God for us to be healed. This sickness really made my faith strong.

I hope that i could be of any help. I am busy lately due to board examination but i would be glad to answer your questions after these busy days. Thanks and God bless to all of us. May all of us be healed from this disease.

Also, i would suggest that may this disease not ruin your life in any case especially because of the effects of this disease on our skin ( bad appearance). I hope that if you have a child who experiences this disease, please make his/her immune system stronger as early as you can. Now, onsets of red marks on my body just disappeared or become minimized to the point of having only one or two if i am really stressed but still, the flattened and black patches is still throughout my body and i don't think this would disappear with only a year or two.

Anyway, I really don't know how this disease started to me but I agree with the post before me that the cause is environmental. I remember that a month or few months before i got this disease, a fesces-smelling thing was brushed to my arms when i am playing. This is just a suspicion, there is no medical basis about this but still i hope that this could give anyone who reads this an idea that maybe a bacteria or somewhat undesirable came in contact with us.

[Ritz]

Hello fellow plc sufferers!

I have had plc for the last 4 months. I am a 42 yr old healthy female living in Texas, US. I don't know how I got this condition. My spots in month 2 and 3 spread from my face to my toes. Initially they were ugly and red varying in size from small red to big oval spots! Early in month 4 I did a body detox, which seemed to clear it up some. I did get new spots though. I would still get itchy and rash over my body. 2 weeks earlier I started Ayurvedic treatment. I have noticed a 80 % improvement with it. My spots are not as noticeable anymore, I can wear short sleeves again. I still get new spots but they are smaller and not as red!! I wanted to share this to give hope to everyone that it can get better. Ito only been 2 weeks since I started this, I'll update again after 4 weeks.
Speedy healing to all!

[skindiseasesucks]

Hello Everyone,

Does anyone still frequent this board?  After 8 years of being in remission, I had another "episode."  I am currently battling it with sun exposure/tanning and a complete overhaul of my diet.  I've been on the autoimmune protocol diet for 18 days now.  I will post updates and results if I am successful this time around.  Has anyone else had success with changing their diet?  I have also started to take supplements to improve my gut health.  I've battled acid reflux and other stomach issues for some time now.

I hope everyone is doing well!   

[emmamae]

Hi, my daughter had a very severe form of PLEVA when she was 4. I posted on here quite often during that time until her system seemed to just kick it our of her body after 6 weeks. She did use a steroid cream and zithromax ( she was too young for stronger antibiotics at the time.) Needless to say it was a horrible time for us and we were truly thankful when it suddenly went away from her body in the exact order it arrived. It did leave white pigmentaion marks the eventually faded away. I was scared for along time after it would come back. Now it has been in remission for 10 years. She is 14 and a normal active teenager and a Ballerina and in generally good health. She had her wisdom teeth out and got an infection and 1 month later... after 10 years PLEVA free, it is back :-( Her Dr thinks the infection may have triggered the response. I also wonder if it is a combination of that with stress.
This time it does not appear to be as much or aggressive as when she was four. I immediately knew what it was. It started on her arms this time and then lower stomach, a little on her back and upper thighs and in her armpits. I took her to her original Dr who did a biopsy on her the last time. She agreed it was back and put her back on the steroid cream but prescribed Doxycycline this time around. My question to the board is, has anyone been in remission for a long time and then have it return? When it came back was it as bad as the first time? Longer? It is hard for me as clearly at 4 she was so young, now her body, hormones etc have all changed. Also wondering if there are people who have a pattern of getting this once in a while but it is always the same, like will hers kick out again in 6 weeks? Thank you to anyone who may have some answers.

[emmamae]

Ugh, looks like everything is still the same after 10 years. No new advice and no new cures.   

[Ritz]

Sorry to hear a abut your daughter's suffering! I've had plc for about a year now, only 3% remaining compared to what I had last year at this time!
I cured my self by cleaning up my diet, anti-inflammatory diet, organic, mostly veggie diet with probiotics.
You should try that for your daughter, she's young so she'll heal fast! Good luck!

[TimmyH]

My son has been taking Bromelain for six months and his PLC has almost disappeared.

EXTRANASE 900NK purchased from France is made by the same company used in the trial but it's weaker than the Italian product.  It improved the condition somewhat but then we tried Life Extension enteric coated 500mg one a day from Amazon.uk and that has almost eradicated the condition, especially considering it's winter when it used to be at it's worse.

[Titema2000]

Hi everyone!...
 Anyone discovered any NEW treatment that works for PLC