Jan, thanks.  I am not taking antibiotics as they seem not to help.  Hence the Remicade.  I hope I can start soon.

AllyKat, isn't Entyvio much the same as Remicade and Humira?  Is it infusion?  How long have you been taking it? 

It's sorta the same thing but it only targets the gut. Less to no side effects. You need to fail one or the other before insurance will pay for this.  I've been on it 6 months now. I could not tolerate Remicade Yes it's a infusion every 4 or 8 weeks depending how you do. I'm on a every 8 week schedule. Also the infusion is about 1/2 hour. I wish this was around 20 years ago. Maybe I'd still have my colon. But at least it's saving my pouch.

 

 

Last edited by AllyKat

May I ask what your problems were with Remicade?  My doc really wanted me to have Humira, but his nurse said that I would reach my Medicare prescription "donut" very quickly, so they recommend infusion therapy even though it costs the government more.  Go figure.

Neurological. I lost feeling in my arms and legs, dizziness, and general sickness. 

Don't go by me, i react to almost everything. Im sure you'll do fine. 

I had 2 induction infusions of Remicade and developed "drug induced lung disease" specifically ground glass opacities. I am out of breath whenever I even get up to walk across the room! I'm supposed to have some pulmonary function tests tomorrow and the I understand it's high dose steroids to reverse it. 

I believe it was working for me. I was starting to feel good again.

Now I wonder if all the other biologics are out of the question and the only thing left is removal of my pouch. Any one hear of this?

Last edited by LoriB

Not sure what is out of the question but they started me in a stelara because remicade and humira didn't work. Stelara is newly FDA approved and supposedly slightly higher chance of remission than  Remicade. Maybe that will be an option? 

It works in some people as a natural antibiotic, I think the doasage is one teaspoon half an hour before meals 3 times per day. It takes a month or longer to work, and even longer in some. It must be 400mgo or higher for it to have antibacterial properties.

If you like manuka honey or any raw and unpasteurized honey, try to eat it without exposing it to heat. I have raw honey in my coffee, tea and I add soy milk first to cool the beverage, then add the honey. Heat kills any beneficial properties. 

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