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 EXPENSIVE. V-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 Monday...my Bestie for years has agreed to make a "Guest Blog Post" on her experience with chronic psoriasis...you wont want to miss that one!
Until Then, Stay Healthy...Stay Happy!