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Simponi... it's now working, how is everyone doing on it?

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Ulcerative Colitis
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Posted 3/12/2014 4:41 PM (GMT 0)
Rey:

The injection was painless, just make sure to hold the auto injector against the skin (I used my thigh) for at least ten seconds until you hear the second click..sometimes it takes a long time for the entire syringe to inject and to hear it.

The only side effect I had was that I felt a bit achy a few hours later and the next day, so I just took Tylenol and dealt with it...I've really felt nothing else. Other that that I found it completely fine.

It took about 5 days before I started to notice the first signs of feeling better, and by day 7, I noticed full days of feeling good. By day 10, I started to see a full days + of relief, and day 14 (today) I am stringing good days together with some hours of minor discomfort here and there.

No side effects at all that I have seen so far. My second shot is tonight, I will post if there is any side effects. I wouldn't expect any because the second dose is half of what the first dose was. So far I am very impressed and relieved.
Posted 3/13/2014 3:48 PM (GMT 0)
Day 15, took my 2nd booster last night, no achy side effects like from the first double dose.

Feeling great this morning, didn't even poop when I got up!....2 1/2 good days in a row and counting, going for the record!
Posted 3/13/2014 4:29 PM (GMT 0)
rey, i don't think your daughter will have a problem with working. besides getting sick all the time from the weakened immune system, i don't think i've had any side effects from simponi. as soon as i take the shot, i can go out/drive and it's like i never even took it.
Posted 3/14/2014 3:00 PM (GMT 0)
Day 16, still holding my own, feeling really good on Simponi.

Now the days have reversed and become great with overall good times, with maybe 2-3 poops a day with no discomfort, but my stools are sometimes total water and foul smelling when they are.

I still maintain I have a stomach bacteria issue of some type mixed in with this, since I have never had this in all my UC years. I see the GI doc in 3 weeks and will bring this up one more time to him. I started probiotics when I started the Simponi, and whether or not they have helped or not, they certainly have not hurt....but not changed the occasional watery foul smelling diarrhea (foul smelling before the probiotics too) I had before (although it has been cut down considerably).

At first I thought it was maybe c-diff, but during this all I had a sinus infection and was put on Cipro and my gut almost completely cleared up during that time, going back to flare when I came off it at 10 days. I understand that c-diff is made worse by Cipro, but other gut bacteria isn't...

I really have to push the issue of a stool culture or a trial of Flagyl next time to eradicate this occasional watery diarrhea once and for all.
Posted 3/16/2014 4:17 PM (GMT 0)
Day 18....still working.

Sat on the couch yesterday, and thought I had to poop...actually waiting 60 minutes till the end of the movie and then went, so proud...LOL!

Still having painless watery diarrhea though, going to talk to the dr in a few weeks about a stool test or Flagyl...I still maintain I have an superimposed Campylobacter or Giardia or something with this, I have never had anything like this in all my life of UC. Thought it was c-diff, but was on Cipro for sinus infection during this and actually cleared up for a bit, not worse.
Posted 3/19/2014 9:18 PM (GMT 0)
Day 21....slipped back, ate some corned beef and cabbage, think I had some histamine problems there...top of the list for histamine producing foods...corned beef and cabbage. Nice going!

I'm slowly returning to normal after 2 days, I mean I don't expect miracles. I've been on it 3 weeks and felt great after 12 days, and I expect to go back a step or two, overall I'm pleased. The big test will be how fast I recover from this slight back step.

All you Simponi users: When you did backslide, how fast did you recover?
Posted 3/21/2014 3:29 PM (GMT 0)
Day 23, the 'cabbage incident' as I like to call it has subsided.

Still troubled with watery diarrhea though, cannot figure it out. Painless, watery diarrhea at every BM through the day 3-4 times), no urgency. Still going to demand a stool test and some Flagyl at my appointment the first week of April when I see the GI. I still maintain I have a low grade c-diff, campylobacter, Giardia, or something.....probiotics made no difference for me except increase the smell. I actually am going less while off them.

Otherwise, no pain, urgency or stomachaches!

I'm at about 90% now, my final loading dose is next Wednesday.
Posted 3/21/2014 11:42 PM (GMT 0)
Scott, what do you mean by final loading dose? I understood that if the Simponi did happen to work for me; then that is what I would stay on.
Posted 3/22/2014 12:20 AM (GMT 0)
The first month, day 0 you take 2 shots, day 14 you take 1 shot, then day 28 you take one shot...then every 28 days after you take one shot.

This next Wednesday is day 28 for me...then I take one shot 28 days later.
Posted 3/22/2014 2:43 AM (GMT 0)
I just took my loading dose yesterday and I feel fabulous! I pooped a solid bm this morning and have had zero pain or cramping all day. I haven't had this much energy in months. I hope this honeymoon phase lasts! There was blood this am, but I'm excited to see hiw I do for tomorrow morning. Usually mornings are rough do we shall see!
Posted 3/22/2014 12:06 PM (GMT 0)
Bob...that's great!
Posted 3/22/2014 2:05 PM (GMT 0)
Scott: o.k. then I must have taken my final loading dose last night. Had two Feb 7, one Feb 21 & one last night. Do you take other meds with the Simponi as well. I have not noticed a big improvement.? I also take three Mesevant daily & Pentasa en.
Posted 3/22/2014 2:39 PM (GMT 0)
I take Lialda and Canasa, which I will always take with it. As soon as the Flagyl kicks in (hopefully to take care of whatever is in my gut) I will enjoy the Simponi!
Posted 3/24/2014 4:37 PM (GMT 0)
Day 26...

Wish I could be better, so weird.....still sitting on watery diarrhea, no blood, no cramps or discomfort, no urgency, going 5-6 times a day.

Can't really explain this, had UC for 39 years and NEVER been like this, Tried probiotics, did nothing for me at all....very strange. I mean I'm really not uncomfortable, just this very low grade tummy ache and diarrhea is annoying!

Dr put me on Flagyl at my request just in case something in my gut is causing this but after 3 days, nothing is any better. Going to get some Metamucil this afternoon on the way home form work and see if that 'shocks' my system back into something solid for once...start out slow, then build up to see what happens.

Last loading dose in 2 days, maybe that will push me over the hump?
Posted 3/24/2014 5:47 PM (GMT 0)
scott, have you tried resistant starches? they firm my poop up a lot. my favorite is potato salad or cold sweet potatoes. you can also buy unmodified potato starch by bob's red mill.
Posted 3/24/2014 6:01 PM (GMT 0)
I've seen some of that on here, and I do love potatoes...cold is no problem for me either!
Posted 3/24/2014 6:09 PM (GMT 0)
honestly, i'd give it a try. i had diarrhea daily and it wasn't until i added resistant starches that it went away. cold potatoes are really what does it for me. sweet potatoes work well, too, and taste better cold. the baked potatoes don't taste great but i just bake a potato in the oven, take the skin off, and then eat it the next night for dinner. chilling it for 24 hours makes the most resistant starch. it's also really cheap. you make make potato salad out of it, too, if you have a good recipe. i still haven't found a good one though haha
Posted 3/30/2014 11:45 AM (GMT 0)
Hi, Joanna, Scott,
Wondering how you're doing on the Simponi. My daughter takes her 2nd dose tomorrow, feeling much better. Not totally clear of blood, but not loose or frequent. And at least the pain is gone!
Thanks
Posted 3/30/2014 3:47 PM (GMT 0)
Rey:

Overall, I'm doing very good.

I still have that chronic diarrhea, but I finish Flagyl in a day, then I assume it will stop because Flagyl gives you diarrhea while fixing the diarrhea...whatever....lol.

I tried Metamucil for a few days during this all which eradicated the runs completely, but I was so tired of taking and timing all that medicine I gave up and will start it Monday after the Flagyl is done.

Overall, I think 35 days after starting Simponi I feel I'm at about 90% symptomatic remission. No urgency,no blood, sleeping full nights, no multiple trips to the bathrooms, no stomach ache, just a little low dull ache stomach pain now and again, not even associated with when I have to go...short lived.

Overall....very very good, and feeling better every day!
Posted 3/31/2014 2:23 AM (GMT 0)
Scott, hope you get past this soon and enjoy a remission.
Posted 4/2/2014 12:46 AM (GMT 0)
OK, Flagyl's done, did squat...guess I got nothing in my bowel...well, really nothing now!

So, back to the Metamucil now, I'm doing 2 tabs 3 times a day with food. That brought me back to normalcy when I was on the Flagyl, but I stopped it because it was way too many meds while I was on it, plus I wasn't taking it with food...now I am, and it's better on my stomach. They also advise to not take anything like that with the Flagyl, incase it speeds things up and the Flagyl doesn't get absorbed appropriately.

Overall though, I'm going 3-4 times a day with the watery D, no cramps, urgency, blood or pain, so I suppose the Simponi is working....I have no urgency to go ever, I just go whenever I feel like it I suppose to see if it's normal.

Simponi did bring me into a fairly symptomatic remission within 4 week though....
Posted 4/2/2014 5:19 PM (GMT 0)
OK, 5 weeks into Simponi and 90% effective I believe.

Flagyl did nothing, Metamucil stopped the diarrhea (2 caps 3x a day with food).

Slight discomfort left in the sigmoid/rectum, prob ask for Rowasa at visit on April 7th, should clear that up in a week and be 100% then!

Man, this is better than where I was 5 weeks ago in misery wondering if this would work...it did!
Posted 4/4/2014 2:59 AM (GMT 0)
Well, now we add some Uceris back to the mix to see if I can get to the 100% symptomatic remission...let's see if it does the trick.....
Posted 4/4/2014 3:36 AM (GMT 0)
Hooray! Glad you're finding a good mix and finally rid of the terrible watery d.
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