Posted 6/2/2016 4:02 AM (GMT -5)
Hey everyone, was following some links for some info about Humira and fell into this forum. A message board, like it. I belong to a couple of groups on FB but I'm not super crazy about them, they are open for all to see, one is anyway and the other is pretty dead, not a lot of activity. I like the containment of a message board...and "I crapped 12x's today" or " I did the whole NY Times crossword on the toilet" are not exactly big winners on social media but I digress, I'll give my spiel.
As you can see by my sig, I'm autoimmune disease wreckage. Yep, I rock 5 of them, UC being the latest. I consider the Graves in the review window, got rid of the thyroid, take the replacement and it's not really a problem. The eye thing, Oy vey, took 6 surgeries to fix, they were pretty bad. I still need one more but I had to switch insurance and my current insurance ( Kaiser, I'm in Oregon), the opthomologist in particular, refuses to do anything about it. Thanks, I look like crazy eyes in one of my eyes. It's not really bad but I notice it. Thankfully, the psoriasis is pretty minimal and with Humira, completely gone, the p arthritis is a lot better too. For my UC? Time will tell.
My UC dx is nothing out of the ordinary, yadda, yadda, yadda, sick with diarrhea, pain, lost a lot of blood, landed in the hospital. While there, had a colonoscopy and got my diagnosis. Before that, pcp thought I had diverticulitis, so she sent me off with antibiotics, pain killer and dietary instructions. Nope, landed in the hospital,very weak and dehydrated, anemic enough for a blood transfusion. I was tested for a bunch of stuff. Right off the bat, GI doc said I didn't have diverticulitis, then said I would need a colonoscopy so he could see what was going on. The bowel prep was a nightmare. Kaiser has "no one walks alone" policy, which means an alarm goes off if you get out of bed. I had to hit the the call button and wait for someone, despite the fact my husband was there. Yeah, real fun night. I got my colonoscopy and GI doc gave me the wonderful news.
Moving on...did the Prednisone thing. Doc wanted me on it longer but I begged to taper sooner than he wanted. I couldn't handle it, there's no off button on that stuff and it was taking me to dark places that scared me. He initially prescribed Lialda but it was too expensive, so went to Balsalazide. That wasn't doing a lot for me, so, since I'd reached our insurance deductable, I tried the Lialda. I dunno, didn't really think it made a difference. I'm fortunate in that after that first hospitalization, I've never been super sick or in a ton of pain...just too many frick'n trips to the bathroom, discomfort, some blood, mucus, the usual but fortunately not debilitating pain that I know lots if UC sufferers have. So, moved on to the next drug, Imuran, the generic, Azathioprine. Two weeks in to that, I got horrible pancreatitis, so I had to stop taking it. Of course, the cheap drug doesn't work, figures. And truthfully, I think the Lialda may have set me in the road to pancreatitis. I may have had lesser of those symptoms with Lialda and the AZ kicked it into gear. My GI says no, Lailda doesn't cause that but pffft, what does he know? I think pancreatitis was on list of possible side effects of Lialda on the CCFA site. The pain mostly went away when I stopped the AZ but it went completely away when I went back to Balsalazide. Did I mention my crap insurance? 2500 deductable, 10 grand max out of pocket. At beginning of year, I had to shop around for cheap Balsalazide, Kaiser doesn't do drug coupons or discount thingy's but I managed a 3 month supply at Costco for 260 bucks with Good RX card, of which they will do God knows what with the info I had to hand over for the card.
I was resistant to the biologic, plus the cost. In January, my GI brought up Humira, asked if I knew what it was. SRSLY DUDE? A preschooler knows what Humira is and would probably ask me if I was just managing my symptoms, and did I know remission is possible with Humira. #CluelessDoctor The stuff is only advertised a gazillion times a day. We had discussed biologics but I guess not by name. Anyhoo, the cost was a factor, we would have to cough up our whole deductable and frankly, I was petrified stepping up to a biologic. I convinced myself I didn't need it and if things got bad, there was always Prednisone but I didn't relish that thought. I was starting to spiral into a worse flare, still not in a lot of pain but the countless trips to bathroom was taking its toll. At my next GI visit, I waved the white flag and consented to the biologic, Humira
Yawn, I will continue this riveting story later. I work in semiconductors, a compressed work week, 12 hr shifts, so I'm up at odd times but I'm tired. Getting on Humira was an ordeal, I'll finish telling my journey, you'll laugh, you'll cry...well probably not but I'll finish it anyway. Despite the trauma/drama, it had its amusing moments. Even if nobody reads my blather, it's cathartic to vent this stuff somewhere.
I'm glad I found this forum, look forward getting to know others with this blasted disease, who understand how much it sucks. Out of all the crap I have wrong with me, I'd kick UC to the curb if I could, it's the worst.