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Author Topic: Pityriasis Lichenoides Chronica  (Read 86536 times)
lindadiane
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« Reply #760 on: Saturday September 19, 2009, 03:51:18 AM »

PLC 123 I have noticed the same thing. I will break out after eating chocolate but I am also allergic to it. And I have also noticed a correlation with a little cold or sinus thing when I have a break out. Interesting. Now if we can just find a treatment or cure!!
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mellanie76
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« Reply #761 on: Sunday September 20, 2009, 12:21:04 AM »

hi! i went  to the derm and he put me on doxycycline and cutivate and im hoping this will help a little. its sooo frustrating to find any derm that even knows or have a patient with this skin condition. i would like to try the tanning salon but im frightened since that whole thing on the news how bad it is too do that. any suggestions? anyone had luck with tetracyline and how long do u have to take it. im currently just taking 100  mg a day. is that too low? i am  on it for a month.
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lindadiane
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« Reply #762 on: Sunday September 20, 2009, 03:04:41 AM »

My derm had me do four cycles of it and it did nothing. You cannot go for light treatments while taking it.
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elseaeff
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« Reply #763 on: Sunday September 20, 2009, 06:03:43 AM »

Thanks so much for the welcome everyone.  Smiley

I have started the minocycline and am using bactroban cream. I am hoping that at least some of the lesions may clear up. I seem to have many more lesions than others describe. Perhaps some of the lesions are much worse because of the scratching and perhaps staph. A biopsy of two can't assure that all 40 or so aren't infected.

This is me being optimistic. Smiley

I wonder if others have had or know of other illnesses I may have that could be suppressing my immune system, the treatment of which might help my PLEVA? I realize there is a huge list of diseases and disorders that suppress the immune system but I wondered whether you all have found any particular ones that seem to connect to PLEVA?

I am grateful that I am dealing with this as an adult. I am sure it is much more difficul to help a child cope with this (I know many of you are here with children with PLC or PLEVA).


dear Kate,
I have had PLC for 5 years now. I also have Multiple Sclerosis, a disease of comprmised immune system. I also have cancer. I had the MS before I contracted PLC, and the cancer last year at this time.  It's ironic that I had my mammagram 2 weeks ago, a year to the date of having it last year and today I received a letter from the hospital where I had the mammagram taken telling me that I must contact my surgeon as soon as possible, they've found suspicous calcifications, just like last year.  Sigh.

Regards,
Elseaeff

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Kate003
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« Reply #764 on: Monday September 21, 2009, 03:26:18 PM »

I had to go off of the minocyclin (sp?) because it made me nausous to the point of debilitation, dizzy, gave me blurry vision, left me even more exhausted then I already am, and finally I nearly fell down the stairs. It did help to make the skin lesions less inflamed and less crusty - particularly the ones on my face. I was then switched to Doxy and I had most of the same side effects. Now I am on Orecea which is essentially a much lower dose of Doxy. It isn't making me sick but also doesn't seem to be helping the lesions and I have some new ones.

I have to go for some major blood work to test for other autoimmune disorders. I have had muscle weakness, fatigue, joint soreness, some swelling in my hands and feet, and multiple allergies and food sensitivities for years but have never gotten a doctor to take it seriously. Now that autoimmune is obviously on the diagnostic table, suddenly the symptom dots are connecting. So I am waiting (with much anxiety) to see what comes of the blood work.
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mellanie76
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« Reply #765 on: Monday September 21, 2009, 10:54:03 PM »

just curios, did any of u girls get tested for tcell tcr genes when  the doc found out u had plc? mine did, but i wasnt suprised becuz i did read that plc is a benign t cell lymphoma. how do i know when the rashes are getting better? does the rash stay  pink for a while?  i have been taking cutivate  cream for a week now and im hoping it  helps. thanks gals!
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pokeypup
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« Reply #766 on: Friday October 09, 2009, 09:41:45 AM »

My main question is...has anyone noticed that it is hormone related? 

Hi Turtledestiny00.  I've always thought my PLC is hormone related.  Right before I was pregnant with my first child, I started getting PLC like bumps which resolved on its own and I was never seen by a derm for that.  Shortly after I gave birth, I had a mirena IUD put in.  The mirena releases a small amount of progesterone and needs to be replaced every 5years.  Right around the time my IUD was due to be replaced, my PLC showed up.  I don't know if there's any relation, but believe me, since my diagnosis in 2007 I have over analyzed EVERYTHING. 

Take Care.
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lfn
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« Reply #767 on: Monday October 12, 2009, 12:41:54 PM »

I don't seem to see any significant changes in my skin since taking Bromelain. But, I will keep my hopes up. I was reading more on T CellLymphoma and it seems like there are some similarities to PLC. I know others have mentioned it before in this forum, what do you all think?Information on T cell says to take a drug called psoralen as part of the treatment.
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elseaeff
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« Reply #768 on: Monday October 12, 2009, 02:35:18 PM »

 Hi there
Greetings to all from Richmond once again!

For those of you who are new here, I have had PLC for nearly 5 years now. I was dx'd with MS in 1998 and must inject interferon every week for the MS. I don't believe the interferon has any impact on the PLC, good or bad, since I had been on the interferon for 7 years before I began to break out. However, interferon is a very strong and nasty drug and it makes me very ill every week when I inject it. And, when I inject it (intramuscular) I get "flu symptoms" which are about 20 times the force of a regular flu. And every week when I take the injection, my PLC goes crazy. The interferon causes me to be ill for 25-30 hours, temps about 103F, aches and pains like I've been hit by a bus, and my legs are once again covered with the pustules. I rarely get them on the inside of my arms or in my hairline, but my poor legs turn purple with the amount of PLC there.

lfn -- T Cell Lymphoma is one of the worse cancers you can get. PLC is in no way, shape or form related to that cancer. Please do not try to self-diagnose yourself. There is nothing worse than doing that and finding out you've been wrong. Psoralen is a form of chemotherapy, overkill for PLC. My daughter in law's youngest brother was diagnosed with this disease 2 years ago and he's had 8 tumors the size of pumpkins removed, but they grow back. He's been on chemo for the 2 years, but it doesn't even maintain the status quo anymore. Please do not scare anyone here with self-diagnoses that have nothing to do with PLC.

Turtledestiny00 -- I don't believe the PLC is hormone related. I had a radical hysterectomy in 1995 and have no ovaries, no hormones. I was diagnosed with breast cancer at Christmas and had a mastectomy and since then the PLC is way out of control. It is so bad that we've had to postpone several operations while my legs healed.

I have learned that it is good to keep acrylic nails because they are thick and rounded and don't break the skin when you scratch. And believe me, everyone scratches. a good thing for children to use are the bath gloves that are usually found with the bath poofs (?) at the department stores. These gloves have a rough texture to them for exfoliating dry skin.

Never take a HOT bath or shower, for that will surely bring them on, as will a sunburn. The worse case I've had of PLC was when I sunburnt one summer. Now I do as my doctor says, no more than 10 minutes of unprotected sun and then lots of sunscreen.

The ointments the doctor prescribed for the itch didn't work, they're too heavy and clog the pores, making the PLC itch worse. Use a light, water-based cream. I use Eucern Original. Many here have had a good track record with whipped cocoa butter, but I still find it too thick for my skin.

I am not a doctor. just someone who has taken 5 years to figure out what to do when I get the break outs. I do find it somewhat amusing that PLC  comes from unknown etiology, meaning the doctors and researchers have no idea as to where it comes from, why it only affects some and not others, why some get it only once for a couple weeks and others get it constantly for tens of years. My amusement comes from the fact that professionals can't determine it's origin, how can we plain laymen do it?

I do know that we will never have a drug specific to PLC because there aren't enough of us who have it and it's not worth any pharmaceutical company's R&D to find a cure for it, orphans that we are.

May you all have a wonderful, itch-free week! Yay !

Regards,
Linda (aka elseaeff)
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lindadiane
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« Reply #769 on: Thursday October 15, 2009, 04:24:42 AM »

Linda: I agree that it is possible it is not hormone related. But several of us see a correlation. Uterus or not, you still have hormones. You will have hormones in your body even as an old woman...they will just be depleted. Many researchers believe it is the loss of hormones that reduces immune function as we age. Nonetheless, you still have hormones. <3
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lfn
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« Reply #770 on: Monday October 19, 2009, 07:08:28 AM »

elsaaeff
Sorry if I offended you, but I am in no way trying to scare anyone with self diagnosis. This forum is to share information and try to find solutions in any way possible. I don't claim to diagnose myself, rather do a lot of research on possibilities when it comes to PLC.
Thank you.
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emmamae
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« Reply #771 on: Wednesday October 21, 2009, 10:07:54 AM »

Hi, does anyone out there have any experience with Acylovir? Especially in children? My daughter has been PLEVA free now for exactly one year. But now she has the Chicken pox! Her derm suggested giving her Acyclovir to help shorten the duration of the pox etc in hopes this will not trigger her pleva to come back. ( of course we have no idea if chicken pox would make it come back for sure, but since she thinks pleva is viral there is always that chance). I am wondering what the side effects will be for her etc? She is only 5 and I am freaked out. I am so sick of worrying about this and hate this so much. Thank you!
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BarbMac
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« Reply #772 on: Wednesday October 21, 2009, 04:56:46 PM »

Hi there everyone.
Have not posted for quite a while. Very busy with my music still, but have taken Acyclovir, can't remember how to spell it, and had good results. I took it because I thought I was going to have shingles again. It stopped the shingles themselves from popping out on my forehead and nose again. I had shingles once and nearly lost my eye sight. This time I felt it coming on. I can't tell you if it made me feel better or worse. I stayed in bed for a few days because I felt awful, but the spots did not appear.  don't know if that helps.
I have had the best summer yet for feeling good. I weaned myself off my Gabapentin twice and have decided that I feel better taking it. Only one tablet a day seems to make a difference. I stopped altogether some time in the summer and almost immediately had a huge spot on my leg that was so itchy and sore. Took a tablet and the Itch went within an hour. 
Where I live we have the H1N1 virus all around us, we have been hit hard by it, so am taking extra precautions to stay healthy. Don't want that on top of everything else. Last spring I had a pneumonia shot which made me feel lousy for a few weeks, but hope that because I reacted to it that it has worked and I will be immune to at least that.
Still have no idea why the PLEVA pop up. Had a few on my nose again while I was off the Gabapentin, but they went away when I got back on it again. So all is good. Keep posting. We will eventually get the clue that will fix us all one day LOL Hugs to all Barb
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emmamae
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« Reply #773 on: Friday October 23, 2009, 12:33:05 AM »

Thank you BarbMac, here we go Roll Eyes
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emmamae
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« Reply #774 on: Monday November 02, 2009, 01:39:58 AM »

Does anyone out there with pleva suffer from night sweats? My daughter had pleva a year ago and is now suffering from Night sweats. She has always been a warm sleeper but for the past week she has been drenched. She just suffered a bout of the chicken pox and maybe the viral illness of that is causing her sweats, but I read in children it could also be an auto immune disorder that causes night sweats in kids. Just curious?
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lindadiane
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« Reply #775 on: Tuesday November 03, 2009, 12:27:02 AM »

When is the last time your daughter had routine blood tests done? You should mention the night sweats to her pediatrician. When I perspire I get much more itchy!
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