Thank you all for your nice comments. When I was enrolled in the study I Never imagined that it would become "the" drug that was praised for putting many into remission. Doing research on it, I'm overwhelmed at all the articles discussing its advantages. Another thing is the fact I was so lucky to get this specific GI. I had seen GI's in Baltimore, Georgia, and now Louisville. I found one in the city that was "the talk of the town". However after months of suffering I made a bold move to be treated with the University of Louisville. I had no idea that "my" doctor was one who was performing cutting edge research in IBD. I'm so thankful I crossed paths with him. He's also currently doing another study.....and hear me out cause you May wanna research it. Those involved swallow doses of microscopic worms (no u don't taste/smell/feel them). The worms for some reason focus on the intestines and eat at the bad tissue, which causes the body for some reason to quit attacking itself (I think it tries to attack the worms, unsure tho). It's taboo def but they were finding those in Asian countries (exposure to these worms)had less occurrence with IBD. Very interesting
Dorri, I wasn't convinced the drug caused the joint pain since I had it before starting the infusions. However, the joint pain has spread into areas that it never was, back, hands, feet, shoulders. But this could also be another autoimmune disorder undiagnosed. I've had MRI of back, left knee, hips,but they find nothing. Only thing that always turns up weird is Sed rate and a few other levels. I'm more inclined to think the joints are related to thyroid/endocrine. However, it will take some re reviewing of levels over a timespan to determine for sure.
I didn't have constipation before the drug. Neither did my infusion buddy. We were like most crohns patients (20+) bm's on some days. Because I've went for so long not experiencing that end of crohns, I sometimes wish to be going, rather than constipated. But then again we often think what we are experiencing is worse because it's currently happening. I sure don't wanna go back to ER visits several times a year, steroid shots, bathroom visits. So I'm thinking this is better even if constipation sucks and is painful at times.
My symptoms the first couple yrs with Entyvio right after infusions included: headaches, sinus/allergy problems, fatigue. I typically would suffer respiratory problems for up to 10 days after infusion. I'm happy to say those symptoms are gone. And I don't experience anything after infusions except a few great days of normal bm's and feeling good. I would recommend the drug to anyone who is tired of going to the bathroom nonstop and the intestinal symptoms. But as dorri stated, I have not noticed improvement in extraintestinal symptoms.
Like I said, you and only you know what you can live with. Humira did nothing for me. And I formed antibodies to remicade. And steroids aren't an option, they make me feel so depressed.
Good luck to all of u, I'm praying for your continued improvement and ability to deal with chronic illness
Post Edited (songstress) : 2/21/2015 3:00:20 PM (GMT-7)