Sunday, January 22, 2012

I have Psoriasis.'s not contagious!

I haven't blogged about this before because for almost two years I have been psoriasis "free".  So, I kinda forgot that I have had this extreme skin condition for almost all my life.  How did I forget?  I started Stelara, the "miracle" drug (for people who have this skin disorder),  just after the children were born.  In less than 6 weeks all my scaly, red, flaky, painful plaques of thickened skin had disappeared.

 It was truly A-M-A-Z-I-N-G! 

Stelara is a biologic drug delivered through injection every 3 months and I couldn't wait to start the regime.  It's a very powerful drug with some very serious POTENTIAL side effects.  It greatly weakens your immune system making you more susceptible to infections.  It may increase the risk of cancer.  You can not be on it if you are in your child bearing years.  Extreme.  I know.  But after living with moderate psoriasis for 35 years, I was more than willing to take the risks.

However, something started to happen at the beginning of January while I was in Florida.  Something I haven't had to endure for almost two years.  My skin was breaking out in psoriasis.  My injection wasn't "due" until the middle of January so, I was in shock (and in a lot of pain)  that I was experiencing an outbreak.  Unless you suffer from this chronic skin condition, it is difficult to explain just how painful and uncomfortable it is when your body begins producing too many skin cells.  It burns.  It itches.  It bleeds.  Your entire body feels like it is on fire and you have an uncontrollable desire to scratch, which unfortunately, is the worse thing you can do.  EVER.  While initially you feel some comfort from "scratching that itch", it only agitates the skin and causes a greater "breakout".   Over and above the physical discomfort, the societal discomfort can sometimes be more painful.  (I am going to post more about this on Tuesday.) 

I would like to share with you the four stages I go through when I am experiencing a psoriasis breakout.  It is important to know that each person with this skin disorder experiences "breakouts" differently:

The spots that appear are quite unnoticeable and painless.

The "spots" begin to spread.  Generally, within the same area.  It is uncomfortable but itchy more than painful

The area becomes less like "spots" and more like "patches".  They begin to develop a thick layer of  skin.  At this point, it's sore and extremely itchy. 

"Patches" become more like" Area Surface Coverage".  It cracks.  It bleeds.  It develops VERY THICK skin layers.   At this stage it is extremely painful, itchy and burns.  It takes about 4-5 days to get from Stage One to Stage Four.

* This is a picture of my arm, from elbow to wrist.  I have both arms, both legs and my back covered in these "patches".

There are a variety of topical medications that people with a mild condition can use to keep psoriasis under control but when over 60% of your skin surface is being attacked, there is very little you can do to manage this disease. 

I am heading to the doctors tomorrow morning for my scheduled 3 month injection but I am so concerned that they may discontinue treatment due to the fact that my body appears to be rejecting the medication.  You see, Stelara is VERY EXPENSIVEV-E-R-Y.  I am so fortunate that Daddy Dave has superior medical coverage.  His company covers 60% of the $25,000 it costs for 4 injections, one year of treatment.  I am also very fortunate that Stelara covers the remaining 40% because we couldn't afford to pay $10,000 a year.  As I bawled my eyes out when I learned of the cost of treatment, Daddy Dave DID say we'd "make it work"  if the drug company didn't subsidize (ya, he's a keeper!).  Although,  I am not sure how we WOULD have been able too?!?!  

My point being, if the drug is not working I can't imagine being "approved" the continuation of such a costly treatment.  That's the management side of me coming out.  On a personal level, I can't imagine how they can't continue my treatment, even if it only provides me with SOME relief from this terrible, chronic skin disorder known as psoriasis.

If you are interested, I will be posting all about the "interactions" I have had with the general public in the last 48 hours, on Tuesday.  On Friday, I plan to blog about the "emotional toll" it is taking on me and the fears I have regarding psoriasis and my children.  THEN, next Bestie for years has agreed to make a "Guest Blog Post" on her experience with chronic wont want to miss that one!

Until Then, Stay Healthy...Stay Happy!


  1. Oh you poor thing. A close friend of mine suffers from it as well. My heart breaks for her when she spots another spot. And I can only imagine some of the ignorant things you have heard. Hang in there and I will think positive thoughts for you and you!!!

  2. Thanks Kim! That means more than you know. I wish your friend wellness...has she heard of Stelara? My Bestie, who will be posting next Monday was on it for 5 years with GREAT success!


  3. Sorry Ging... I don't have chronic psoriasis, but I do have a boatload of health problems that I won't bore you with here. Part of that boatload includes flare-ups of psoriasis related symptoms, ie. thickened, itchy, inflamed patches on my arms, legs and back.

    I guess that's my long-winded way of saying that I do get what you're going through and that I'm sorry this is happening. I know that feeling of "OK, What the hell am I supposed to do now?" and I can definitely relate to the out of this universe medical expenses that insurance may or may not cover, based on some bureaucrat's mood that day.

    I'm sending out good vibes for your upcoming doc appointment(s)and I'll be by to check out your post and your bestie's guest post too.

    Having a chronic illness SUCKS, plain and simple and I'm here if you ever want to bitch about it. My email is battycrocker50(at)gmail(dot)com

    Hang in there, kiddo. Gentle Hugs...

  4. oh my word, I'm so sorry - didn't know it was that bad but I had heard of it. I really hope they sort you out!!!!

  5. Hope you get a good response to the treatment and return to good health very soon Ginger. Your blog is usually all fun and games but I love the candor of this post in talking about what is obviously a serious (and common) health concern. Stay healthy my friend

  6. Oh Honey! I'm so sorry! *HUGS*

    I can relate kind of. I have a skin condition too. Except they don't know what mine is. It only affects my hands and feet. It's a lot like psoriasis in that I get the skin build up, burning and itching but then my skin splits open and bleeds. It pretty much feels like I have thousands of paper cuts all over my hands and feet.

    I've been to every doctor in my area and been as far away as the MayoClinic. But they can't figure it out. I spent many, many years (while working in PR) with my hands bandaged and covered in leather gloves--super embarrassing in summer when it's 100+. Not to mention having to be on my feet for 10+ hours while I'm bleeding in my shoes. Good times, good times.

    I'm so sorry we've had to go through these things. Hang in there! I'm thinking about you. :)

  7. YIKES! That looks very painful! I'm glad the medication worked for a while, but SUCK that it isn't working right now!! Hopefully they don't kick you off of it!!!
    Keep us updated woman!

  8. I can only imagine how frustrated you must feel... I suffer from psoriasis also, but very minor..and it's under my hair...good luck with everything...hope the treatments keep working!

  9. I'm surprised that you can go from your stage one to stage four in just a few days. But it should be noted that you are nearing your next injection and should at least continue for another treatment or two. I would recommend though that you presuade the Derm to perscribe or "give" you some topicals to help knock the "P" back a bit. I'm on Stelera but also use Clobex for the last month before my next injection. It helps hold the Psoriasis at bay.

  10. Ouch!!! I don't know how you take care of tiny people while dealing with that too! Hope you feel better soon.

  11. Thanks for this great article…



Related Posts Plugin for WordPress, Blogger...