Just started my first loading dose of Simponi tonight!

So lets make this story short. I was diagnosed in 2008 and was in and out of remission. A bad flare started in 2010 and led to two hospital stays. To be clear - it's 2014 and I am still in that flare, but it's not as bad. I live what seems to be a normal life to a lot. I go to work full-time but I have a good stress free desk job at a good company, and that helps. I live close to work now and that helps. I've changed my life to adapt to this flare, but for the most part they were all great things (good job, close to work, etc.). So my GI and I have tried everything under the sun (almost). I mean we've been through just about any popular UC treatment out there. Steroids only works in high doses and never has put me into remission. 6-MP nothing. Remicade & Humira made me feel like it gave me a bit more control but I think now it really doesn't. Since I can work full time and still do a lot of things I love even with frequency and urgency, I'm still not into surgery with all the treatments coming down the pipeline now - so don't talk to me about that one, I've heard every story about surgery (you will not convince me right now). Well it hit rock bottom last month and my sodium and potassium levels hit the floor so I got admitted to the hospital and on a drip. I guess they figured they should stick me on steroids again - I was ok with that, maybe I needed it. This wasn't very long after I ended Humira, but had not yet called the doc about my decision and ending script. I'm in the middle of moving apartments, helping family with some things, and work stuff -- so nothing is going to settle down until the middle of October, but it all hit rock bottom before then (of course when stress comes about...).

So my last drug was Humira. Man did it hurt ! You would have to really get that sweet spot between the muscle and the skin and depending on the make-up of your body that was hard to do. Generally it was severe for me but on occasion I didn't feel much but a big needle prick. It got to the point though where I felt it wasn't really working and it also took me at least an hour or two to work up the courage to press that button to inject.

Simponi, yes now it seems they know what they're doing when designing "smart" pens. You press it down until the green lip goes into the pen and then press the button. Felt absolutely no needle. Completely painless - and I did two! WOW! This is awesome. It's also cheaper for me. For 3 pens (starter kit) for UC it's only costing me $30 with my insurance. Humira was $60 just for normal dose, the starter was more like $120 with Humira. Not to mention with Simponi's copay assistance it'll be $5 bucks next time.

So far it's been an hour since I pressed the button. It's making me sleepy - as the label said it would (drowsy and dizzy). I'm not feeling dizzy though; although I have not gotten up off the couch yet. This is good - because with the steroids I've been taking Valium to help me sleep.

I'll try and keep you guys posted to let you know if it helps me out! I wonder how many others are going through flares that last for years?

Post Edited (xeekk) : 10/3/2014 8:13:31 AM (GMT-6)

So this is the morning after the first loading dose (2 pens, 200 mg total) of Simponi. I feel absolutely incredible. Last night I slept very well even though I got up to use the bathroom maybe 2 - 3 times, but that's a giant improvement from the night before. I also have to consider I ate a smaller supper (like I should be doing).

In any case I also did not take my sleeping medication last night - so it's awesome that I slept! I also felt so good this morning that I have lowered my prednisone down to 40 mg (from 45 mg the day before). I was on 50 mg just 2 days ago... I should probably explain how I'm handling the prednisone since the doctor has allowed me to control the whole process there:

What? I'm not following the doctors script order on prednisone tapering? That's right. I'm an analyst by profession and nature and have long experience in prednisone tapering (FOR MY BODY ONLY). The doctor knows this; in fact he told me I'm his smartest patient and he wanted to leave the tapering plan all up to me. He has prescribed the slowest taper he's allowed to for me and told me to do what I felt was best with it. The speed is all up to me. Now you should know this may not work for you and you should follow your doctors orders as my doctor has actually allowed me to do this, yours probably will not.

So how do I gauge this to judge my taper speed? A lot of it has to do with as soon as I feel I've been on a dose long enough (1 - 2 weeks) I will go down by 5 mg the next day. If that day goes poorly (the way I feel, the bathroom visits, the stomach issues), then I move back up for a couple more days and try again. When I try again I go down by 10 mg (this reduction changes later, as I get more sensitive under 20 mg). If that day goes well, we stay there for another 1 - 2 weeks. Eventually when I get to 20 mg I have to start tapering even slower (most likely by 5 mg). Basically the speed at which my colon inflammation adapts to the prednisone is going to be a more sensitive situation than my adrenal glands coming back to life. I typically have to move at a slower pace than what the doctor would normally prescribe -- mostly because my colitis is really sensitive to reacting badly when my dose goes down. Honestly I think if Dr.s had a lot more time with their patients and could do a lot more analysis of their treatment and condition they could treat them far better. I am fortunate to have a very scientific, analytic mind -- but I feel I have to do my Dr.s work for him because he has merely seconds to make decisions on me sometimes (not joking, there are 30 doctors for every 1,000 patients here in the U.S. now -- one of the worst in the world). I'm also fortunate to have a doctor who now trusts me with these decisions -- he was even surprised when I wrote a computer program in the hospital in 2010 to help him gauge my progress, it logged everything from medication, food, and more importantly my bathroom visits were logged just by a keypress on the computer when I got up.