I did a quick search on Simponi before starting this post. Only a couple of posts turned up and the information was limited...
I was away on the weekend and got back on Monday afternoon. Later that afternoon I realized that I had forgotten about my monthly Entyvio infusion that was scheduled for Monday at 10am! (Nothing like missing an appointment for an infusion that costs about $3500 per treatment, yikes!). It's not like me to forget but usually I had been going in on Thursdays or Fridays so this day was an unusual one. I just never checked my Google Calendar or my handwritten daytimer - both where I had the appointment well documented as a reminder! I didn't feel too bad because the last Entyvio infusion appointment I had last month, the hospital had me sit in the waiting room for about 2.5 hours before calling me in to tell me that the medication hadn't arrived yet! Being a small town / rural hospital, they are pretty laid back and these things really aren't a big deal! I ended up getting a call from them later that afternoon and going back that evening to get it done.
Instead of calling the hospital to see when I could go in and get it done, I decided to call my GI to see if she still recommends I get my Entyvio after all of those recent tests I took (bloodwork, urine, x-rays etc.) and getting another opinion from another GI (which I wrote about on the other thread I started here). The doctor's office called me back this morning and I was told to STOP Entyvio. The nurse told me that the plan is to start me on Simponi.
Now I am in the process of trying to get ANY and ALL information about the drug Simponi. I read here that you can do self-injections like I did with Humira. Can you also take orally? What can I expect as far as the positives and negatives with this drug? ANY information from any of you who have taken it or know of those who have would be great... I imagine I could be looking to start soon.
I was on Imuran for over a year back in the mid90s prior to my surgery. I have already tried Humira, Remicade, and Entyvio, each for several months. Not sure if any of them helped, and if so, how much. I am not sure if the Entyvio is working or if I would be in exactly the same condition without it. I started it by getting infusions every second month. After it seemed ineffective I started monthly infusions and have been on that schedule for the past 4 months or so. Hard to say. My daily 24-hour bowel movements tend to be between 6 & 10. I would estimate my average is 8-9. At times I am very gassy everyday. Very gassy. Lots of times I go to have a bowel movement as a preventative measure or to feel better even if it is not required at the time. I weigh less now than I can ever remember in my past - except for the few months following my July 2000 surgery. Typically I weighed around 160-165 in recent years. This morning I was 153! Recently I have been well below 160. I don't feel like I am underweight whatsoever, I have just lost some muscle mass over time... This has not been a sudden thing, either.
Any information on Simponi is appreciated.
