I've got soul but I'm not a soldier...

I took my second increased dose today. The last week went well. No side effects aside from minor dehydration and fatigue the day after injection. I also get really hungry the day OF injection, so Sus and I had Waffle House for breakfast. It normally bothers my stomach but the Crohn's doesn't seem to react as much at this increased dose. If you're taking Humira make sure you hydrate the day of, and the day after injection. It's incredibly dehydrating and, for me, summer in Georgia doesn't help. My current drink of choice is unsweet tea with mint tea added to make it a bit more refreshing. Dr. Wolf's nurse called and went over my labs again today. She confirmed that Dr. Wolf wanted me to continue with 120MG per week for the next eight (8) weeks, however, she reminded me that insurance has not approved this dosage yet and she doesn't want me to run out and not have any medication left. They submitted paperwork, and for the first two doses I had enough on ha...

I took two pens on Thursday (6/29/17) and another one today (6/30/17) and I am EXHAUSTED. No idea if it's helping yet, but the shots seem to make me hungry. Reminder: I am on Humira for Crohn's Disease, Hidradenitis Suppurativa, psoriasis, and polymyalgia rheumatica.

Well, my GI got all of my blood work and all of the stool samples back. Things are not great. My CRP is elevated about four (4) times the normal limit, and my white blood cell count is elevated. My adalim levels, which measure how much Humira is in your blood stream, are STILL too low to be considered therapeutic, even at 80MG per week. The weird thing is I don't seem to be building an immunity to the drug, so that's good news. No C Diff or anything to deal with right now. My GI  is fantastic. He is an excellent doctor. He's a research physician, and he's willing to try things that other doctors can't, or won't. So he wants me to try 120MG of Humira per week, for the next eight (8) weeks to see if we can get my levels up to therapeutic. I'm taking my first increased dose today. I finished the doxycylcine and I'm still on clavamox, but the HS flare continues. It's not AS bad as it was a few weeks ago, the drainage has decreased a bit, but my arm...

My dermatologist and my GI agreed that because my adalim levels were low and I wasn't building a tolerance to the Humira we should try dosing at 80MG per week. That's two pens/syringes every seven days. I was worried about the increased dosage so I did a little of my own research and I spoke to a friend who is a scientist. There were no increased risks and my body was tolerating the drug well already. It seemed that a higher dosage resulted in an increased chance of remission for most people. So we did it. A whole 3 months at 80MG per week. I experienced no unusual side effects. I try to hydrate on injection days and I seem to be hungrier than usual, but my intestines seem to tolerate fiber a little bit better so I tried healthier snacks and the occasional salad. I don't know how much is the Humira and how much is the steroids but things seemed okay for quite a while. Then, a few weeks ago, I started having an HS flare. Hidradenitis suppurativa is an unpredictable dis...

I've got a few new diagnoses on top of the others but we're working through it. Crohn's disease, hidradenitis suppurativa, migraines, psoriasis, and polymalgia rheumatica. I'm on a 60 day taper of steroids and an experimental dosage of Humira at 80mg per week. Will update later.