2003-08-15 - 12:47 p.m.
I realized that I haven't really given any history or information about myself. I hope there are people reading who may be interested in Enbrel, or who just have psoriasis and are curious about different treatments. Anyway, maybe I'm just talking to myself.
I was thinking that, if there are indeed people reading, that those people might want to know a little bit about me and how I came to have psoriasis. If not, they may just skip this entry and I will return them to their regularly scheduled Enbrel Diary with my next entry.
My real name is Ami. I love cats, hence "meowka" (just some nonsense name I came up with for being online). I am 26 years old, married to the best guy in the world, and we have a small furry child named Black Kitty. No plans for the human kind. I live in Georgia, and I work in a hospital as the secretary for two doctors' practices. I am a musical person, and have played piano and enjoyed singing most of my life.
I first got psoriasis when I was 18 years old, as a small nickel-sized patch on my scalp. I sort of ignored it then, not really knowing what it was, but when it had spread to my whole head, I knew it was not to be ignored.
I saw my first dermatologist. I was officially diagnosed. He meant well, but nothing he gave me worked, he wasn't really knowledgeable about treatments and the disease (I found out more online than he could tell me) and he didn't really have a great bedside manner. I found another doctor when my psoriasis had spread and was on my scalp, ears, and also, starting in small patches on my legs. At first, I covered the spots on my legs with band-aids, because the spots looked like bug bites, and it was summer, and I thought I could get away with it.
I did. People didn't really think anything of it. I was able to hide my scalp with my hair, so it was like nothing was wrong with me. I saw the second dermatologist for a while, and then the patches on my legs got bigger and bigger until they were covering the complete lower half of my legs (just on the front-side). I was then put on a drug called Methotrexate. I took Methotrexate, went to my check-ups, and tried to carry on a life while feeling poisoned. I felt so horrible on this drug. It made me nauseated, it made my head hurt, it made me feel completely wiped out before even starting my day. I slept a lot. Luckily, I was not working at the time, so I was able to take it easy.
However, the drug did little to nothing for my psoriasis, and my doctor was becoming more and more hurtful towards me. He was very insensitive, and did things the "old-school" way, which meant embarrassing me thoroughly at each visit. I'll just call him the "Get Naked Doctor" and leave it at that. I understand being thoroughly checked, but he took it too far. I finally had to stop seeing him. I dreaded each visit, and his attitude and demeanor were more horrible each time. I requested copies of my records, and ended my relationship with him. I had seen him for about two years. I had also gotten a job while I was his patient.
Around the same time, a co-worker mentioned this wonderful dermatologist that she saw for just ordinary things like adult acne and such. I was scared because I was by this time in the throes of very severe psoriasis (now on scalp, ears, back, stomach, arms, legs--the legs were the worst), that hurt, and burned, and made my life a struggle everyday. I couldn't clean my house without my legs cracking open and bleeding. I suffered each night trying to get comfortable enough to go to sleep, most of the time, only sleeping (not restfully, mind you) eventually from the exhaustion of TRYING to sleep. The Methotrexate, which I was still taking, had helped minimally at best, and it was time to re-evaluate. I called the dermatologist my co-worker saw.
I made an appointment with him, and my life with psoriasis changed then and there, though I did not realize it at the time. He is a great doctor. I knew it from the first time I met him. He is so caring, and knowledgeable about psoriasis and all the treatments for psoriasis. This was a far cry from my two previous doctors. I knew he was a keeper.
I have been with him for close to three years now. He stopped the Methotrexate because of the length of time I had been on it (possible liver damage, and it wasn't helping me). I tried several different combinations of topicals, steroid creams, etc. Nothing touched it. Next, I tried Soriatane. I didn't like it at all after only a month. I had already had issues with depression and anxiety, and didn't feel comfortable with taking it. So, I stopped it.
Next, I tried Neoral, and used it for about six months. Didn't help. Made my blood pressure crazy, too, so that had to be stopped.
It was around this time that Wonder Derm told me about Enbrel. I thought it was too good to be true, the way he described it. A drug that could be safe? No, couldn't be. And I know the jury's still out on long-term Enbrel use, but from clinical trials, it looked good.
There was a catch, he said. It wasn't available yet. Once it started production, about three months after he had told me about it, I filled out the necessary paperwork to get it. After that, it took another 10 months to actually be able to get it.
So, that brings us to present. I have been on Enbrel for 8 months now, and it is the best drug I've ever tried for my psoriasis. It works, even if not completely. I still have about 40ish% coverage, but the coverage I do have is not angry, not red and cracking open and bleeding. Still itching, still flaking a bit. I still wear long-sleeves and pants year-round, and have just grown accustomed to that. I do think I will continue to improve (see my previous entry) on Enbrel.
Thus brings this entry of my psoriasis history to a close. Thanks for reading, and take care. Again, hope I'm not just talking to myself. :-)
