Porokeratosis, anyone else have it?

[cardinal]

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!

[lidia09]

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

[maglib]

Originally Posted by cardinal

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!

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.

[maglib]

Originally Posted by cardinal

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!

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????????

[cardinal]

Thanks Maglib for the info!!!! 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