I've posted before on this, and yet to find anyone else that has it. Its an immune skin disease on my arms and legs. My dermo has not been any help, from what I read there is no cure? I would like to know how I got it? It started about a yr ago and got worse after my cervical fusion surgery. I think it may be due to x-ray or my weakend immune system from the herniated discs? I also have scalp sores, scabs. All my lab work is ok. Just the one biopsy came back with porokeratosis, some of the lesions are red and some brown, scaly no itch. , just UGLY. I just want to find out what is causing it! :confused:

Hi Cardinal
Sounds like a horrible thing to have to put up with. I'm sure I read somewhere that the most common cause was over exposure to UV light i.e. too much sunbathing in the past. I think there's possibly a genetic link too.

I think when they speak of immunosuppressed people, it's more likely those with HIV or folks who are on high doses of steroids after a kidney transplant or something. Why would you have a weakened immune system because of herniated discs?

You'll no doubt get more info by searching around the net.

Lidia :)

I've posted before on this, and yet to find anyone else that has it. Its an immune skin disease on my arms and legs. My dermo has not been any help, from what I read there is no cure? I would like to know how I got it? It started about a yr ago and got worse after my cervical fusion surgery. I think it may be due to x-ray or my weakend immune system from the herniated discs? I also have scalp sores, scabs. All my lab work is ok. Just the one biopsy came back with porokeratosis, some of the lesions are red and some brown, scaly no itch. , just UGLY. I just want to find out what is causing it! :confused:

I also have been diagnosed with this and there isn't much to find other than it sometimes leads to cancer and you should go for skin screening often. I also think that it may be related to Bowen's Disease but, my Dr. did not diagnose this. I did get a prescription for the Porokeratos and it helped clear it up but, I have such unsightly scarred sking now. I am fair skinned and 36 but, I have no famility history of this disease. I did get electrocuted and I have very dry skin whith sebhoric dermatitis and scalp issues all of my life. I guess I am unlucky. Let me know if you have found anything more out.

I've posted before on this, and yet to find anyone else that has it. Its an immune skin disease on my arms and legs. My dermo has not been any help, from what I read there is no cure? I would like to know how I got it? It started about a yr ago and got worse after my cervical fusion surgery. I think it may be due to x-ray or my weakend immune system from the herniated discs? I also have scalp sores, scabs. All my lab work is ok. Just the one biopsy came back with porokeratosis, some of the lesions are red and some brown, scaly no itch. , just UGLY. I just want to find out what is causing it! :confused:

The ointment that is helping clear the scaly patch but, not eliminate the scarring is Temovate Ointment .05%. Have you seen a good dermatologist. My skin looks terrible and I have scarring everywhere. You would think that eliminating the scars would be required treatment by the HMO's but, I guess scarring isn't a disease????????

Thanks Maglib for the info!!!! :wave: I think this may be caused by my breast implants??? I have had 2 surgeries for implants. The 1st ones were removed 2 yrs ago due to severe scar tissue and hardness, drooping. I think they may have developed "mold" and when he removed them they drained into my body??? or even left some silicone shell in me?( they were saline) I had a different set put back in and since this I developed the disease. I recently had the last implants out, 1 month now. Every time I have a surgery or testing with x-rays it seems to get worse. I am hoping that since I have had the implants out maybe I will get better? I do have alot of health problems but my lab work looks good? Time will tell.
Thanks for the info on the ointment! I will call my dermo and ask about it.
Do you get red/purple spots , like blood spots on your arms? I do, and after a few days they fade to brown.
I think I too have Bowens, sure looks like it. But trying to find a doctor to listen! I have questioned Lupus too. I did have a high ANA several yrs ago, before this all started.
Well guess we have to diagnose ourselves. I have quit smoking, took the implants out, trying to eat better so gotta just leave it up to Faith now.
Please keep me posted on your prognosis. Best wishes, cj :angel:

Wow! I thought I was the only one on the planet that has this stuff. I went to a dermatologist about 10 yrs ago and he froze the lesions off but never could tell me what they were. I went to another dermatologist a few years ago and she acted like it was nothing to be concerned about. She attributed it to the fact that I had been going to a tanning salon years ago. She prescribed Retin-A but I couldn't tolerate it....so I discontinued using it. Now however, I'd try anything to get rid of this stuff. It itches at times like crazy. Anyone else have that symptom with this? What is the usual treatment for this? Anyone have any luck with a treatment that gets rid of it? Thanks for any info!!! Take Care...Scarlett

Hi Scarlett :wave: Mine doesn't itch but I do have very dry skin that is itchy, the lesions are not itchy. It's so strange how they are only on my arms and legs, why not the face? if its caused by the sun? I have gotten so depressed over all the health issues, now have to wear long sleeves in public and I live in Fl!!! Are your lesions scaly? and rough? mine are. Some of mine look like skin cancer, brown shades, others are red. I have tried so many rx creams, I've just started the one Maglib advised, time will tell. Have you or Maglib ever had surgeries? implants? that's all I can figure that has caused mine??

Hi Scarlett :wave: Mine doesn't itch but I do have very dry skin that is itchy, the lesions are not itchy. It's so strange how they are only on my arms and legs, why not the face? if its caused by the sun? I have gotten so depressed over all the health issues, now have to wear long sleeves in public and I live in Fl!!! Are your lesions scaly? and rough? mine are. Some of mine look like skin cancer, brown shades, others are red. I have tried so many rx creams, I've just started the one Maglib advised, time will tell. Have you or Maglib ever had surgeries? implants? that's all I can figure that has caused mine??

Hi Cardinal :) No, I have never had any surgeries (at least not in the past 15-20 years) and no implants. The last dermatologist told me it was from sun exposure or tanning beds and was a relatively benign disorder. I, too, only have them on my legs and arms - nothing on my face. However, when I finally put a name to the disorder (by reading your post) I did a lot of research on it. It said that this can also be caused by a compromised immune system, hereditary, or sun exposure. I don't think I have a compromised immune system and don't remember anyone in my family having this - so in my case it would have to be the sun exposure - or over exposure. It also stated that it is very rare for these lesions to appear on someone's face and that only a small number (less than 15%) of the patients studied ever had their lesions turn into skin cancer.

Hope this helps put your mind at ease a little bit. I know how annoying this condition can be. Take Care....Scarlett

I have porokeratosis, I've had it for years. I've been told it's from sun exposure. I hate it my skin feels so rough and scaly.

Thanks you all for the help! Do any of yours bleed? are they red at times? Mine look dark purple, red on some then turn brownish red. Do you find any creams that really help? I've tried them all it seems... :confused:

Mine get red if I'm out in the sun. They really look bad in the summer. People ask what's wrong with me. I had a few of them frozen but I've got way to many to keep doing that. I've never tried anything because I was told there is no cure.

oh, also I did have one on my face, had that one frozen.

Mine get red if I'm out in the sun. They really look bad in the summer. People ask what's wrong with me. I had a few of them frozen but I've got way to many to keep doing that. I've never tried anything because I was told there is no cure.
This is such an awful disease! Its so strange how some people can bathe in the sun and no problem and we get stuck with this! I know, every time I go to a doctor for blood work the nurse's look worried about me when they see my arms, I have to assure them its " not contagious" I am actually thinking of moving out of Fl due to the heat and sun, I love the warm weather but, not at this expense.

I love being outdoors, and I always use sunscreen, but I guess the damage is done from many years ago when I didn't use sunscreen.

I love being outdoors, and I always use sunscreen, but I guess the damage is done from many years ago when I didn't use sunscreen.
I'm with you - Aprilrain - I LOVE the outdoors and have been sitting around for 2 weeks now dreading the Spring and Summer months wondering what to do about hiding my arms from the world.

I had about 20 or more lesions frozen years ago - all that did was get rid of the lesion and leave a worse scar. The last dermatologist I saw really got upset with the scarring that was left by having them frozen and told me never to do that again and prescribed Retin-A (which was useless because I couldn't tolerate it).

I wish there was a cure for this - it's really annoying - not to mention ugly!

Take Care....Scarlett

I used Retin-a on my face for years, but never on my arms and legs for the porokeratosis. It would be a really expensive treatment, I have zillions of spots. It is really embarrassing in the summer when my skin is exposed, but I'mnot going to stop doing what I like to do because of it. (brave words now when I'm wearing long sleeves!) It's good to finally talk to someone else who has this!
April

I used Retin-a on my face for years, but never on my arms and legs for the porokeratosis. It would be a really expensive treatment, I have zillions of spots. It is really embarrassing in the summer when my skin is exposed, but I'mnot going to stop doing what I like to do because of it. (brave words now when I'm wearing long sleeves!) It's good to finally talk to someone else who has this!
April
That's why I may leave Fl. It's so hard wearing long sleeves here! My spots are so red now and my sking is so dry. I got a puppy who is teething and scrathing my arms, now I have cuts along with the spots, :rolleyes: My poor body. Yes it is so reassuring now knowing I am not alone with this. It's pretty scary when your doctors and nurses ask "What is it?" :confused:

That's why I may leave Fl. It's so hard wearing long sleeves here! My spots are so red now and my sking is so dry. I got a puppy who is teething and scrathing my arms, now I have cuts along with the spots, :rolleyes: My poor body. Yes it is so reassuring now knowing I am not alone with this. It's pretty scary when your doctors and nurses ask "What is it?" :confused:
Cardinal - I just had to laugh when I read "It's pretty scary when your doctors and nurses ask "What is it?" I thought I was the only one who ever heard that!!! One doctor told me to just "scratch it off" - geez - am I lottery ticket or something??? Wish it would be that easy to just scratch off! LOL Take Care...Scarlett

Cardinal - I just had to laugh when I read "It's pretty scary when your doctors and nurses ask "What is it?" I thought I was the only one who ever heard that!!! One doctor told me to just "scratch it off" - geez - am I lottery ticket or something??? Wish it would be that easy to just scratch off! LOL Take Care...Scarlett

I agree - scary - and I've tried scratching it off, it doesn't work! Only makes things worse!
April

Looks like there are several scarletts with this problem:

I have sores in my scalp that are about to drive me crazy. They used to fill with pus and come to a head and they would be extremely sore. Now, they just come up in the follicles and are terribly sore. Nothing seems to help. I have tried every thing under the sun that I could get over the counter and everything that the Dermatologist had to offer. The only thing that seemed to help temporarily was a long regimen of antibiotics, but once I was off of them, they came back...

As someone earlier posted, I too have had a 17 year history of breast implants and have an autoimmune disorder for which I am on Prednisone and pain medication to help this. I have a lot of health problems... Right now, the scalp is at its worst and I cannot tolerate anything at all on the scalp: shampoo, mousse, gel.

Has anyone had any luck with any natural product that does not have a bunch of chemicals in it. I am embarrassed to go out in public, because my hair just looks terrible all of the time. What did people use before they had shampoos with all of these chemicals in them? Anyone know?

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Thanks,
Cathie

Scarlett6 - after reading your post I'm wondering if you have sebaceous cysts on your scalp? Has anyone ever mentioned that before? I get them behind my ears and have had them appear on my scalp recently - they are extremely painful! Antibiotics are about the only thing to do - I have been told to make sure I wash my hair every day and always wash behind my ears and use alcohol, too. I'm trying to remember what you can use on your hair that is all natural. If it comes to me I'll post it for you. Take Care....Scarlett