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08-29-2013, 10:58 PM   #1
Txladi29
 
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Simponi

Hi everyone,
I'm new here, but not new to UC. I've had this lovely(not) disease for 25 years.

I've taken asacol, sulfasalazine, prednisone and Lialda. Lialda worked the best for me until recently. Now, it's acting like an expensive placebo.
Dr is moving me to a new drug for UC, Simponi.

Has anyone ever taken this medication? What can I expect upon injection and thereafter? Immediate relief or must it build up in my system?

Thanks everyone,

Txladi29
08-30-2013, 01:36 AM   #2
Cross-stitch gal
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Hi and welcome to the forum!

I'm afraid that I know nothing about Simponi. Looks like it could be similar to Humira and Remicade. But, I'm not sure. However, I can tell you that you've come to a wonderful place for support and information! Please let me know if you have any questions. Take care!
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08-30-2013, 08:46 AM   #3
2thFairy
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I haven't used Simponi, but a few other people on this forum have. You might check out this link and ask these people about their experience with it.

http://www.crohnsforum.com/showthread.php?t=52215

It is in the same drug family as Remicade and Humira, and many people get good results with those drugs. I failed Remicade, but had very minimal side effects, so while Remicade did not help me, I have nothing bad to say about my time on it except that the infusion takes several hours to complete.
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08-30-2013, 10:16 AM   #4
Maya142
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My older daughter (who has AS but not IBD) has used Simponi for her joint pain. She said the shot is much less painful than Humira. It didn't really work for her unfortunately and she's now on Humira.
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08-31-2013, 09:29 PM   #5
Txladi29
 
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Thank you everyone. I will look at the link.
Maya.. It's good to hear its not as painful as Humira.
iTunes's I'll be posting my experience in the next couple of weeks.
09-07-2013, 03:56 PM   #6
Txladi29
 
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Started Simponi on Thursday. Medication was shipped to my office. I took it to the dr's office for instructions/training. One injection was slightly painful... However I think it was because it was still a bit cold. The 2nd injection was not painful at all. I did have a funny taste in my mouth about 30 min after, but nothing bad... Somewhat metallic. It passed within 30 min-hr. today, I woke for the first time in a very long time with no pain. I'm so happy for it seems that it's working. Time will tell.
09-07-2013, 04:25 PM   #7
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Thanks for the update! Glad to hear that this seems to be working our for you. Please continue to keep us updated! Take care!
09-07-2013, 06:19 PM   #8
2thFairy
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Hooray!!! May your success continue!
01-13-2014, 07:36 PM   #9
lgpcarter
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I'm about to start it for Crohn's. Is it still working for you Txladi29? Any other side effects?
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Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
01-14-2014, 12:22 AM   #10
Txladi29
 
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Hi there. I am still taking the Simponi, and its working VERY well.
I take it every 4th Thursday evening, each time in the top of my thigh.
Some injections are worse than others. Seems the warmer it is, the more it burns.
Don't leave out more than 30-45 min prior to injection.
I'm being extremely careful with the cold and flu season. Got a flu shot and avoiding anyone that is sick.
No side effects that I've noticed.
Overall, I feel so much better. I was going through 2-3 pain pills a month. I'm down to les than 1/2 pill per day. I feel so fabulous. I have my life back !!
Highly recommend Simponi!

Txladi29
01-21-2014, 03:03 PM   #11
lgpcarter
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Thanks! I just started last week. 200 mg (four injections!) every two weeks for six weeks and then he is going to decrease it a bit. So far, so good. Hurt waaaay less than Humira and I think I may be feeling a little better already. Mouth ulcers seem better, anyway.
09-03-2014, 11:56 AM   #12
SupportiveMom
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Searching high & low for those that have experience with Simponi. My kid is taking it for 'off label use' for crohn's. I have posted in the crohn's forum on it, but thought I might ask how you guys are doing on it if you don't cross over to the CD treatment part of the forum.
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Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-03-2017, 07:01 PM   #13
Txladi29
 
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Hi all. I haven't visited in quite a while.
I've been on Simponi since Aug 2013, with it controlling my UC for the most part.


I love Simponi. No side effects, no pain.
Easy peasy...once a month.
Its truly been great. I feel like I've been healthier on it, than before it. I did battle the flu twice on it, and pneumonia once over the past 3.5 years.
I cannot recall the last time I was on steroids.

We had an insurance change resulting in a GI change in Sept 2015. (Blue Cross TX to Scott & White)
My new Gastro is great. And the support staff is fabulous!
Over the past 6-9 months, the Simponi does not seem to be working as well as it once did.

GI wants to try a different biologic and really wants to try 6MP or Imura.
My daughter tried Imuran and had her hair fall out. I'm not going to go there. I've told him as much.

I've been trying to hold on changing biologic meds, as I'm trying to increase my life insurance and life insurance carriers like to see consistency with meds with UC and Crohn's.

However, after starting to flare last month, which is now at the point of waking up 2-3 times a night, I'm considering Remicade, which is my GI's preferred medication.

I've also looked at Humira and Entyvio, but wonder if I should hold those meds as options should Remicade not work.

I'm not looking forward to an all day infusion, but can make it work with my job.

Has anyone tried Remicade after Simponi?

Thanks in advance...Txladi29
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