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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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hateuc
Veteran Member
Joined : Jun 2010
Posts : 2361
Posted 3/5/2014 3:08 AM (GMT 0)
That is awesome!!
B
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 3/5/2014 3:45 AM (GMT 0)
That's great Scott!!!! I'm doing well on Simponi too. Third injection Thursday :)
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/6/2014 1:30 PM (GMT 0)
Day 8, still holding and feeling good!...although I do have to learn to not eat a Jimmy John's 'unwich' (all lettuce, no bread) for lunch followed by a dinner of cabbage rolls....a little too much roughage in one day while healing......
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 3/6/2014 4:36 PM (GMT 0)
Just gave my third injection. Didn't feel a thing. First I was worried, then I saw a little blood and the yellow line was there on the auto injector. Painless!!!!!!! So not like the Humira . Did pretty good for the month prior to this injection.
Using only oral meds right now!!! Wow :)
annadee
Regular Member
Joined : Dec 2013
Posts : 396
Posted 3/6/2014 4:46 PM (GMT 0)
I am so happy to hear about
your good results. I haven't heard of simponi before and now I know that it's another option available if I need it. Thank you for your day to day descript
ions, I think they will help a lot of us. There is a lot of bad news on this forum, seeing positive results makes me feel really happy.
Stef17
Veteran Member
Joined : Feb 2003
Posts : 1811
Posted 3/6/2014 5:45 PM (GMT 0)
Omgosh, I'm so happy for all of you having success. And I'm so extremely jealous! I tried simponi about
2 years ago for RA and it was a miracle drug for me, but it caused the craziest flare up of my psoriasis that I have ever had. I was covered from head to toe. I tried a second injection a month later just to make sure and the psoriasis flared even more. So... Simponi is not an option for me. Such a bummer. Please keep posting your positive results! It's great to see!
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/7/2014 4:06 PM (GMT 0)
Day 9, had a rough day yesterday because I ate waaay too much of crap I shouldn't have. But, all in all, the only thing that happened was a bit of a tummy ache, nothign serious, frequent trips to the bathroom and some loose diarrhea..nothing major, and it cleared up after each trip.
This morning I woke up feeling pretty good....Simponi is holding, and I do my second injection in 6 more days.
How is everyone else doing on this?
Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5726
Posted 3/7/2014 8:57 PM (GMT 0)
ahh yeah, fiber will do that to me no matter what. just seeing the words "cabbage rolls" gives me diarrhea. it sounds DELICIOUS though.
i got my simponi in the mail today but will probably have to delay my shot again. i've had to delay every one so far because i get sick. i feel like crap. i dont even know if it's worth taking any more. i'm sick all the time with colds/flu/nausea/sore throat. it's getting ridiculous since i never used to get stupid illnesses like this.
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/8/2014 1:11 AM (GMT 0)
Well, what is it, day 9? A little set back the last day or two, back to some diarrhea, but no stomach ache. I'm going 4-5 times a day with pretty watery stools, but I do have to say that I have no pain. I didn't expect this to cure me right away, but I am going pain free for the day, which is most important.
Also, no urgency which is the BIG thing. I'll be watching movie and actually wait an hour to go......lol. My next shot is in 5 days, so maybe that will jar it into submission totally. I'm not worried, this has really cleared it up a lot. The way this seems to be working is that it gives me longer and longer blocks of time where I see symptomatic remissions, then I go back to the old ways, but less severe...then into symptomatic remissions that last longer.
Still...overall I am so much better than 9 days ago when I started this!!
jayce
Regular Member
Joined : Nov 2007
Posts : 445
Posted 3/9/2014 1:43 PM (GMT 0)
How long is it until your next shot?
Please keep posting .
Thanks
Post Edited (rey) : 3/9/2014 8:00:29 AM (GMT-6)
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/9/2014 3:39 PM (GMT 0)
Well, Simponi shows it's working again....BLAM!
At noon yesterday, it was like a wall came down and I was in symptomatic remission after a sketchy 3 days of on and off mild (no urgency, just diarrhea and mild tummy ache) discomfort....what a weird drug, but hey...I'll take it as it starts working for me.
It seemed to start working after 5 days, showing brief periods of working for hours at a time, then full symptomatic remission at day 7, slipping slightly back to some mild flare symptoms at day 9, 10, and half of day 11, then day 11 it just stopped the symptoms in it's tracks again.... I didn't even realize it till that night when I went to bed, I was like, hey!...I felt fine since about
2pm today!
Woke up this morning (at freaking 9:00) feeling wonderful again, no pooping or anything....next shot is Wednesday, looking forward to it!
It appears (to me anyway), that Simponi works in clumps of hours/days at a time rather than slowly calming down the disease...anyone else have this effect?
hateuc
Veteran Member
Joined : Jun 2010
Posts : 2361
Posted 3/10/2014 12:21 AM (GMT 0)
Awesome Scott....and I like blam..lol!!
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/10/2014 2:20 PM (GMT 0)
Monday, Day 12 after initial 200mg loading dose...back into symptomatic remission for the last 2 days, it's teasing me again!
I think the way this is working is that it works in chunks of time. I noticed that it started by working for an hour, then a few hours, then for a day, then a few days. Each time I slipped back into some "flare", it was less and less than what it was the time before. Today I woke up, no discomfort, pooped a bit (fairly small but normal), and went about
my life. I feel good this morning, maybe that slight discomfort... or is it anxiety in our heads that we all have just thinking about
it (when will they come up with something to fix that, aside from psych meds?!?).
I'd give this drug so far an 9/10, my next loading dose is Wednesday...looking to get over the hump with that one, and push myself into total symptomatic remission!
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/11/2014 12:42 PM (GMT 0)
Day 13......
****sniff sni***** ...It was so pretty I almost took a picture of it...****sniff sniff ****
Yeah, it was of a poop this morning. I woke up and had a normal, gas free, diarrhea free, pain free, trouble free, run of the mill, goddarn normal everyday American poop.
Life is good, let's get going with the day.
Second shot tomorrow....how's everyone else on Simponi (or otherwise) doing?
MrsSdot
Regular Member
Joined : Mar 2014
Posts : 33
Posted 3/11/2014 7:43 PM (GMT 0)
I am a newbee here. Glad to hear of your success. I had my 1st loading 200 mg of Simponi on Feb 7th the second on Feb 21st and am waiting for my 3rd on March 21. I still have a lot of symptoms. The only other med I take is Mezevant. I really want to steer clear of the roids.
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/11/2014 10:12 PM (GMT 0)
Wow, sorry to hear...not even some improvement?...How much if any??
Do you have UC or proctitis?
Dr-A
Veteran Member
Joined : Jul 2006
Posts : 2105
Posted 3/12/2014 12:24 AM (GMT 0)
Good deal man. Hope it continues working. That's my next drug after I start this Humira that's still sitting in my fridge.
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/12/2014 12:36 AM (GMT 0)
wait...says you're on Remicade, but you have Humira in the fridge?!?....is there a sampler we don't know about
?!?
Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5726
Posted 3/12/2014 2:29 AM (GMT 0)
i'm supposed to take my 4th shot tomorrow but have to wait for these stool samples i got today. they will probably be back in a few days.
after all night of pooping, i had a normal poop at noon and have been fine all day. definitely exhausted, but no belly pains, gas, cramps whatsoever. i think it was just a bad bout of food poisoning.
i will take my next shot when my stool samples come back clear, i hope.
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/12/2014 2:20 PM (GMT 0)
Day 14, feel great!...had a small few hour stomach flare yesterday (problem at work, psycho stomach as I call it) but it went away, and the rest of the day was great. I'm starting to see a switch where entire days are going great, and the 'problems' are only taking an hour or two of the day instead of the good times being the hours and flares are ruining entire chunks of the day.
I take the second 14 day booster this evening, hoping this will push me over the edge to where I have days and days of greatness with nothing ruining them (although I've already have had runs of 2-3 days of near perfection already in the last 2 weeks since starting).
MrsSdot
Regular Member
Joined : Mar 2014
Posts : 33
Posted 3/12/2014 3:24 PM (GMT 0)
Hope it keeps working for you. Fingers crossed :)
I have UC -have had for 25+ years. This (which is the worst flare I have ever had) flare started shortly after Sept 2010 when I quit smoking?? How wierd is that - and have tried EVERYTHING!!! Very frustrating.
asacol, pentasa, enamas, mezevant, prednisone, you-name it, and now simponi
Scott Z
Regular Member
Joined : Feb 2014
Posts : 366
Posted 3/12/2014 3:37 PM (GMT 0)
Not weird, there is a lot of research into nicotine and UC...look it up!
How is Simponi working for you, and how long did it take till you were in remission (if you were)?
jayce
Regular Member
Joined : Nov 2007
Posts : 445
Posted 3/12/2014 4:20 PM (GMT 0)
Thanks for posting Scott. My daughter is scheduled to begin on Monday. Were there side effects that would keep her from going to work the next day? I wish she could start on a Friday, she doesn't like missing work.
Thanks
MrsSdot
Regular Member
Joined : Mar 2014
Posts : 33
Posted 3/12/2014 4:21 PM (GMT 0)
I have only started Simponi Feb 7th. I'll do my 4th auto inject March 21. It has improved a little; so I am trying to be an optimist. I realize it took close to 3 years for my flare to become unbearably bad....so I cannot expect results overnight.
MrsSdot
Regular Member
Joined : Mar 2014
Posts : 33
Posted 3/12/2014 4:26 PM (GMT 0)
I did not find the side effects too bad. It is good practice to do take it at night before bed; then just sleep thru most of the side effects. At least I find that works for me.
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