Thanks for the updates! I love reading how it is working for everyone else.
I had a period of about 2 weeks last month where I thought the Stelara may be helping, and I had a decent MRI, but then my normal crohn's pains returned so we repeated the MRI (enterography) last week. I just got the results. They are saying that my fistulas appear to have healed and there is no evidence of the abscesses (that I've had for quite some time). Inflammation wise, etc. the Crohn's appears to be worsening though. It is so weird, but matches how I'm feeling. My doc was hoping to get me tapered off the prednisone this month too, and is not going to now. I'm only @10mg so I guess I shouldn't complain to much. I'm just so tired of these tremors, mood swings, moon face, and feeling so HUGE. (Despite my daily sickness I am 25lbs over my normal weight). Plus, I thought a benefit of the prednisone was supposed to be energy, and I am not reaping that benefit at all. I am SO exhausted all the time.
Stelara was kind of my last try medicine wise before I decided to go all in for a stem cell transplant. (Insurance denied, but if I receive medicare in January like I should then they cover a large portion, and I am currently fundraising for the remaining amount). I'm glad it has done what I really needed to prepare me for transplant in getting rid of the fistula/abscess problem... but at this point I'm pretty decided that's about all its done for me and going to do everything I can to raise the $ for transplant. (Especially since every time I get the Stelara injection I have a slightly worse reaction and have to do a medrol pack and benadryl to keep my throat open...and I'm unsure if it is related but the last 4 days I have had headaches that keep me from functioning at all.. a dull headache all day long, and then random stabbing behind my right eye that makes me see spots... and the only thing that makes it better is laying down)
Sorry if this seems scatter-brained.. I feel like that's just me anymore,lol.