Hello to all.
After realizing I really didn't have many people to talk to about my disease, I searched online for a support group and found this one! I reviewed it and it looked pretty good so here I am.
I'm in my early 30's. This all began, as I'm sure it did for many of you with psoriasis. I started with a small patch of psoriasis behind my left knee when I was 12. I knew what it was because I had an "ABC's of the Human Body" book that my Gram had given me. I didn't bother telling my parents, as they always told me we hadn't money for the doctor. PLUS, I knee it wasn't curable nor contagious and just shrugged it off. It later spread to my head, so I used my dad's Denorex. Of course, my little sister gifted the whole house with head lice and my parent's quickly found out what was under all my hair. They freaked the hell out. To the doctor I went! Who agreed with what I had been trying to tell them.
Then if flared up right bad in 9th grade. All over my legs and arms. I was on all sorts of ointments and treatments plus light therapy, which gave me 2nd degree burns to my back. Meanwhile, high school was absolute hell as no one understood what psoriasis was. My parents would bicker back and forth over who "gave" me the disease. (Both had the gene. Dad actually had a small patch of psoriasis but he would oft argue that he didn't get it til he was older, so it couldn't be from him *facepalm*)
It never really seemed to flare down and I just dealt with it, so to speak. Then I heard about biologics. I was so excited!
And I got turned down. Again and again by the insurance companies.
Until I had 75% BSA covered and pustular psoriasis. Finally, finally, I got Enbrel. It was great! I never looked back.
Until I started to get sharp pains in my wrist when I would push myself up. I talked to the PA at my one job and he suggested taking an aspirin daily.
Biggest. Mistake. Ever.
Did NOT know aspirin can flare you up right quick. It sure did me. I went from a wee bit of pain in my wrists to feeling like my wrists were on fire. I saw my PCP, had carpal tunnel ruled out, and off to the Rheumy I went. Got my diagnosis, argued about MTX ( I'd been on it before and DID NOT want it), and was told to take naprosyn 500 bid.
Soooo, guess who got psuedomenigitis from the naprosyn? And the joints really did feel much better. So we switched to Humira. And things were FABULOUS. Heck, I even walked a 5K this early October.
And then the Humira just stopped working. My skin flared up and I realized that my thumb looked like a big ole sausage. I went from feeling fine to suddenly having every joint in my body hurt. I was laid up for a few days. And then my elbow stopped bending or straightening. It was in a 'L' shape.
So back to the rheumy I went. I told the rheumy that I thought the Humira had stopped working. He ignored everything I was saying and said, "Eh it's just a flare up. Let's start MTX." I reminded him I really didn't do well on MTX and really didn't want it. He ignored my concerns and told me to take it anyway. He said he'd see me again in a month and if that didn't work, we'd do Remicade or Stellara. I said "Ok."
I took the MTX like he said, and just like I said, I got sick as hell. Nausea all the time-and yes-I was taking my Folic Acid. My liver enzymes, of course, went up. I saw him again in a month and lo and behold, the bastard lied to me. My joints were not any better, in fact, a bit worse. So I said to him, "So we're going with Remicade now or Stellara, right?"
And then he crushed me. He said,"No, you need to take a higher dose of the MTX for longer." I thought I was going to cry right then and there. He told me he'd see me again in 4 weeks-which would be Xmas and he would be on vacation, which I reminded him of. So he said he'd see me in 6 weeks.
The receptionist said the soonest appointment available would be in 16 weeks. 16 weeks. 16. Weeks. Needless to say I cried. My bf, who is awesome, talked me into seeking a second opinion. Which I did.
First thing the new rheumy did was make my MTX SQ or IM to keep me from feeling so nauseated. Gave me a short trial of pred which made me feel amazing. It was great. All the swelling went down. Of course it came back with a vengeance when the pred taper was over. She said, I'll see you again in 2 weeks and she did see me again in 2 weeks.
Now I'm waiting for Cimzia to get approved by my insurance company. I hope that it'll get approved sooner than later but they're taking their sweet time. Meanwhile, as I'm waiting, I'm getting more and more joint swelling and pain. Previously, I'd only really had pain and disability to my left side. Now I'm getting a big old lump on my Right hand and the ball of my left food has become horribly swollen and inflamed. I can't walk well right now. I thought I'd just lean more on my right but NOPE now I have sharp pain in my right heel.
So now I don't have a good size and I'm getting more and more grumpy and depressed. Yay.