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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.

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I was on Simponi for a couple of years. I believe it was monthly injections. I had switched from Humira after it was becoming less effective. Humira stung a lot on injection, but that was the old formula. Simponi was a breeze by comparison. It is every 4 weeks (I had Humira weekly), so easier to plan travel. No pain with the injection with Simponi. It can be given by infusion too. No oral form.

Jan

Jan Dollar

Thanks for the info. as always Jan.

On a short 2-night family trip to a rented cabin about an hour from home.  Little did I know until we arrived that there is no restroom in the cabin but rather in the restroom / shower building about 30-40 steps away.  Since I am up every night at least once thru the night - sometimes more - for a bowel movement, I knew this would be a hassle.  Well, I woke up at about 2:30am to a massive thunderstorm.  Just wild.  Lightening, intense rain, and what appeared to be hail as well.  Meanwhile, I am laying here wondering when this will end so I can go and urgently relieve myself.  Finally, it slowed right down and I was able to go without  getting completely soaked.  Dodged a couple of lightning strikes however!

To make the trip more unpleasant, while my back seems tolerable at the moment, pain on my right foot has returned.  It's very uncomfortable to say the least....

C
Last edited by capper

Oh geeze! Sorry to hear about this. We do some camping (both tent and cabin) a couple of times a year. It is always a “crap shoot” in regard to the logistics of weather and restrooms. I try to plan when weather is predictable, but it is not always possible when you have to reserve 6 months in advance. I nearly always take extra loperamide and pain pills on these trips.

Jan

Jan Dollar

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