Pityriasis Rubra Pilaris

[3846Mom]

I've had red rashlike spots all over my torso for almost a year now.  They don't itch that much but they are unsightly.  After I shower they are worse.  Looks like I have chicken pox.  Went to a dermatologist and she did a byopsy and the result came back that it "could" be pityriasis rubia pilaris.  She is still not sure.  She told me to use a cream but there are so many of them that I'm not sure how this is going to help.  Has anyone else had this and if so what treatment was used.  I can't believe there isn't anything out there that I can take orally to help this condition!  thanks.  

[jagesh50]

A course of vitA would help.Pregnancy,an absolute contra indication for high dose vitA.Do consult your doc.

[3846Mom]

Thanks, but my doctor has had me on 10,000 international units of vit. A for a couple weeks now.  Doesn't seem to be helping.

[Bhupinder Kaur, MD]

Hello,
The treatment of pityraisis rubra pilaris consists mainly of topical corticosteroids,calcipotriol,emollients,extracorporeal photochemotherapy and oral medications like retinoids,antimetaboiltes,immunosuppressants and vitamins.

I sincerely suggest you to discuss these treatment options with your dermatologist.
Hope it helps.Take care and pls do keep me posted on how you are doing or in case you have any additional doubts.Kind regards.

[3846Mom]

Hi.  Thanks for your concern.  Personally, I don't think I have Pityriasis Rubra.  My rash looks more like Pityriasis Lichenoides or Rosea.  I seem to be getting nowhere with my dermatologist.  She has me using this cream but the spots are all over my torso and groin it's hard to cover the whole area properly.  I've been doing the vitamin A and it hasn't helped.  I've decided to get a second opinion but have to wait until the end of the month since it is so hard to get into doctors.

Basically, my rash is more noticable after I take a shower.  Yesterday I decided to take a cold shower and they didn't redden up like chicken pox quite as much.  That's why I think it is more like Rosea than Rubra.  The only thing is I don't remember a large patch at the beginning.  I used to have extremely bad sinus infections until I had sinus surgery, I tend to get cold sores and I had a case of mycoplasma pneumonia while I was pregnant several years back that produced a funky spiral rash and attacked my joints.  I've been sinus infection free for over a year now which is great!  

My dermatologist has not giving me anything orally to take which is frustrating.  She keeps saying the lab is "leaning" toward Rubra and also mentioned Seborrheic Dermatitis both of which look nothing like what I have.  I feel like since it is not cancerous she is blowing it off and not doing enough reasearch.  I plan on calling her on Monday.  

Thanks again and I will keep you posted.

[dippin]

Just wanted to let you know that my 4 year old son was recently diagnosed with this problem.  His dermatologist gave him Protopic Ointment .1%.  It's nearly cleared up, and to be honest, it has worked the best so far in his fight against this rare skin disorder.  His skin is soft, the color is back to it's normal shade, and there isn't any additional peeling.  

According to my dermatologist, she says that this condition is due to a lack of Vitamin A, and there is a medication that can stop the symptoms, but she didn't recommend it for my child since he is still a growing boy, and the side effect of that medication would stunt his growth.

hope this has helped.