Hi, I'm 37 and diagnosed 4 weeks ago with PLC and for the moment struggling hard I'm on tetralysal and steroid creme 2xday. I'm also taking extra vitamins and bromelain to boost my system again. Is there anyone who has other tips and tricks to get rid off these awfull spots. I'm going on holidday in 2 weeks and I will not look pretty in my bikini
Good morning,
I'm sorry to hear about your diagnosis. However, I can tell you that you are not alone. PLC is among the rarer skin conditions, but there are several of us who, for lack of a better term, suffer from this condition.
I want to first start by saying that I am not a medical professional, and in no way should my advice substitute medical advice. This is all coming from a place of opinion and my own personal experience.
To answer your question, if the Tetralysal is not helping, I recommend asking your doctor about Topicort (Desoximeasone Cream USP 0.25%)
This is the only, and I emphasize ONLY cream that has worked for me. I've tried several other prescription ointments that should have done the trick, but the spots persisted. The Topicort cream helped me to heal very quickly. It is also a steroid cream.
One of the most important things you can do is be vigilant when it comes to your skin. Try to catch these little spots when they first start. I'm sure your dermatologist already gave you information about lifestyle but a few tips I'd also recommend:
-NO shower “puffs” or sponges or wash clothes or anything that exfoliates the skin. Throw them away, forget they ever existed. I was irritating my skin so badly and didn’t even realize it until my Derm scolded me for using those. She also recommended I switch to dove bar soap. I’m currently using Olay sensitive, but I’m considering switching back to Dove.
-Take only luke-warm to cool showers, and try not to spend a lot of time in the shower. My skin practically tells me when I've been under the water for too long. My arms will start to feel "tight"
-Switch your shampoo and conditioner if need be. Some products have a lot of chemicals and can irritate our skin.
-Switch to a fragrance free laundry detergent for sensitive skin. And NO more dryer sheets or fabric softener if you use these products. That makes a HUGE different for me.
-This one is going to sound silly but…I noticed that if I wear underwear with any type of “lace”, it will irritate my skin around my hips and I will have a flare up. Sometimes after washing and drying lacey materials over and over again, the material itself starts to become abrasive.
-A lot of people rave about coconut oil. I've only recently started using it on my face at night to help remove makeup. I'm actually going to post a topic because I need some advice myself regarding face concerns. I wish I had more info on that.
Some people have seen good results with a daily anti-biotic. I have to be honest, my Derm prescribed antibiotics for me to take daily, and I have not taken them. I personally have adverse reactions to some antibiotics or their side effects, so I’m just not comfortable with taking them regularly. But that is not to discredit antibiotic treatment. It works wonders for some people.
I’ve studied a bit lately about photo-therapy lately. It seems as though some folks with PLC/PLEVA/Mucha-Habermann’s have seen good results from UVB therapy. This is usually done at the dermatologist’s office. No dermatologist will recommend laying in a tanning bed, or standing in a tanning booth at a tanning salon, BUT some folks claim to have seen excellent results from doing so. If that is something you are considering, I recommend reading a LOT about it first and discussing the pro’s and con’s with your doctor. Not all UV beds are alike. And that that type of exposure is strongly linked to Melanoma (skin cancer) and we do not want that!
And finally, I don’t know how much weight this theory holds, but I’ve noticed (with myself) a link between flare-ups and being “sick” with any type of cold or virus. Every time I have a cold, I have a flare up. I even had a sinus infection a few weeks ago and I had papules appear on my chest and neck, after being clear almost all summer.
Everyone experiences their symptoms differently, but I hope some of this can help you cope better with this condition.
If I think of any more tips I will post again for you. Good luck, and welcome aboard. Hopefully one day there will be a solid fix for this. In the meantime, these forums are a great place to share advice and help one another. Have a good day!
I also just want to add some information, I'm a 30 year old female, and I was officially diagnosed in May of this year (2016) via skin biopsy, after a long back-and-forth with my primary doc and dermatologist.
thanks for the feedback, really appreciated. The tetralysal helps a bit but not that much, after the spots cleared, other red spots come again and again and all over I really have no clue what to do more now., I'm so depressed
this creme we can not buy here in Europe, asked in Belgium and Spain already
I'm not sure if youve had any bloodwork yet, but if not, I strongly recommend asking your doctor to draw bloow and check for Strep and other possible viral invaders. It may sound crazy, but it's worth asking. When I was at the peak of a flare up, right after being diagnosed, my dermatologist ran some blood tests and found moderately high levels of Strep. I didn't feel sick at all, but it was there. I took a round of Amoxicillin for that and the flare-ups drastically slowed down.
I know the depressed feeling, all too well. I recommend reading as much as you can about the condition. It will help out your mind at ease a bit. It helped me a lot. The more I understand about the condition, the more peace-of-mind I feel.
That cream specifically is just one of many. There may be something out there that works just as well or better for you. Perhaps your doctor can recommend something similar to the Topicort cream that is available there.
The cream does not prevent the spots from appearing, it only helps to heal them once they appear.
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The first derm did not even listen to me and said it was just winter skin. I was beyond upset and so was my Rheumatologist who referred me. My next derm is know for dealing with Auto Immune skin conditions. Started treating me with steroid cream, and vasoline and wore PJ's to cover a nite. Did not stop spread of rash but gave some relief. By the time I got to his office red spots had a clear coating on them. Very caring made a big difference, I was getting depressed but know I can not do that because of dealing with Rheumatoid that has gone wild the past 4 years. Not saying easy but very important. You feel like you are being attach and you are. Spread all over my body, worse each visit. Started biopsies Third on thigh, fresh break out. Came back PLC surprised because I was 77. Of course I went on Internet even read through studies which only gave me a hint. Conclusion do not really know cause. Derm put me on Doxycylene for a month started clearing and now only on face, back, arms and upper chest. On face like lichen can peal off but really bleeds. All bleeds when I pick it it bleeds. Use cream steroid and cream. Triamcinolone Acetonide Cream USP, 0.1 percent occasionally on face and body. Skin very, very dry. My skin is doing well, Do not get in sun because of other drugs I am on. Do take 2000 IU daily my Rheumatologist runs lab test for D yearly, I pay for it.
I am a 56 year old female, about two months ago absolutely completely out of the blue, I got a red itchy scaly area on my top right forehead, it gradually moved up into my scalp and i feel "lesions or sores" on my whole head that feels like 100 bees stinging me, a week or so later, i noticed red lesions all over my chest and went to the ER, which was told i could have roscea and was given a topical cream, within a week, it had spread to my neck and shoulders, i went to another doctor who thought it was psoriasis and again prescribed another ointment (Clobetasol), every 4 to 5 days i noticed new lesions going down my legs and arms, even my pubic area and inner thighs, my back was also "infested". now almost two months since inception, my face, ears, around my mouth and eyes, literally my whole face and the initial outbreak has now spread to the left side of my forehead and further down my face, there is not one spot on my whole body that is not affected. i finally broke down and went to a dermatoligist who did a biopsy, i got the results today (11-3-16), which was inconclusive but differential diagnosis was pityriasis lichenoides chronica (PLC). Today i got a steroid shot, a month's worth of antibiotics (Solodyn), Triamcinolone Acetonide cream to apply twice a day, and had to stand naked in a light booth. I know they say don't look things up on the internet but i wanted to see what i might be dealing with and frankly, i am terrified. when it started getting worse, i truly thought that i was dealing with 3 or 4 different issues because none of the lesions looked the same, the thing on my forehead looks like someone poured boiling water on me, never did it have any lesions that have appeared on my body, which seem to appear bright red that were different sizes, then fade but not go completely away with new ones every single day, the ones on my chest literally "exploded" and looks almost like 20 or 30 ringworms! my face even has different spots, some looking like insect bites and others like scaly peeling dead brown skin but in big splotches, again, nothing like on my body. i realize i haven't had time to see if they treatment i was given is or will work because i just started it today, i just wonder if this is normal stages or symptoms and could this be something else? I was not sick in the days leading up to this and have not been sick since then other than feeling very tired and one UTI. I have severe osteoporosis but on no treatment. any information or suggestions would be appreciated and welcomed. these past two months have been excruciating for me and i am reading on here where people have dealth with this for many many years, I wish i could post some pictures on here because i am still a little skeptical that i really have this, but alot of this does seem to apply to me. Again thank you and desperate for any information and advice
I am so sick of this disease having had it for 7 years. My dermatologist has tried everything under the sun, and I've finally resolved myself that it is here to stay.
If anyone has new tips on PLC please let me know. A dog shouldn't have this awful condition let alone a human.
It's so ironic - usually the people who get PLC are young and male - I'm neither. It's the worst thing I've ever had and why ISN'T there a cure??