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Crohn's Disease Forum » Treatment » Simponi/Golimumab


 
06-06-2013, 08:36 PM   #1
smallfry
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Simponi/Golimumab

Hi everyone,

I have been approached to switch my Humira to Simponi for my perianal crohn's. Does anyone have any experience with Simponi for Crohn's? I don't seem to see it approved for crohn's online for me to do research. ugh, I hate anit-TNF drugs!!!
Thanks in advance.
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Crohn's disease since 2001
abscessing/fistula since 2006
seton placement for 8 months
4 cases of crohn's related iritis


Diverting Loop Ileostomy Sept.19 2012
Proctocolectomy April 16th, 2014 and off all major meds

Meds
Past - asacol, prednisone, imuran, Remicade from 2001-2008, flagyl, cipro, Humira 2011-2013, 10 months of IV meropenem
Current - T3's, prozac, clonazepam, probiotics, caltrate plus, multivitamin, vitamin D
06-07-2013, 11:04 PM   #2
PsychoJane
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To be honest, I don't know what to tell you as of yet. I don't have access to medical research as of tonight so I can't find much more than what is accessible from open sources and free access but what I find is a bit confusing. It has been approved by FDA for UC, it is not mentioned for CD. I found a paper that was saying to be cautious with the use of Simponi because it had the opposite effect, triggered flare... I assume the idea of simponi is coming from your GI?

Here is the link: http://onlinelibrary.wiley.com/doi/1.../art.30546/pdf
It is two years old but the source is credible. Things most likely have evolved since. It is obvious that 2 patients is probably not an important enough sample to bring validity over this but it was published... Yet, do not discredit Simponi based on this only but I know that if I were you I would just question my GI about it. Sure thing your specialist has heard of the last developments regarding this and I know mine give himself a pleasure to give me counter arguments and even direct me to the journals in which they have been published, which I appreciate.

Anyway, if I come across something more pertaining I'll let you know and hopefully someone can tell you about their experience with this treatment in the time being!
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

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send me a private message and i'll do so =)
06-08-2013, 12:24 AM   #3
smallfry
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Thank you so much for the reply!
It is for sure my GI who has brought up simponi. I'm very reluctant which is why I came here in hopes of some experience with simponi and CD. He also mentioned it's more expensive. I plan on questioning him more next visit. Thanks for the link.
06-23-2013, 07:21 PM   #4
lamor32twigs
 
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I've been using Simponi for my crohns disease for about 14 months with great success. The problem is it is not approved for crohns so I rely on my rheumatologist office to give me samples for my treatment. So far that hasn't been an issue.
I had good success on remicade until developing an allergy to it. Tried Humira and Cimzia with little relief. Honestly I can say I feel better on Simponi than I have since my remicade years. I also had uveitis and that has gone in remission within the first 2 weeks of my injection. I too suffer from peri anal crohns and haven't developed a new fistula since starting it. If you can try it I would recommend it!
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Currently on off label trial of simponi, prednisone and methotrexate
Diagnosed 1988
crohns of large, small intestine, rectum. Severe oral crohns.
arthritis and uveitis.
Bowel resection 1995
failed remicade, humira, cimzia, cellcept, methotrexate, flagyl
06-23-2013, 09:46 PM   #5
rollinstone
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yo smallfry, if your in Canada, I recommend asking your doc if he can do whatever it takes to get you onto the SSI vaccine clinical trials - theyre located in Vancouver, there is some info on SSI vaccines on the forum, but theyre looking extremely promising. check it out
06-24-2013, 06:17 PM   #6
lgpcarter
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I am going to ask about Simponi on Friday when I go to see my GI. He mentioned it and Stelara as possible next steps if the Humira didn't work. Been on since end of March and now on weekly doses and it ain't working! I also have perianal disease and fistulas.

I think it will be through a trial, though, as it is not approved here yet for Crohn's.

I am also in Ontario, will let you know what I find out on Friday.

Why the switch? Does your doc think Simponi will work better? Humira not working?
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Diagnosed in with Crohn's in large and small bowel in 2000.

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
07-11-2013, 06:09 PM   #7
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Lamor32twigs: I have had some of the same experience as you! I actually just started using Simponi for my crohns disease yesterday. I also had success on remicade and then after having my daughter I developed an allergy to it as well. I have also tried Humira and Cimzia with little relief. I then took Sterlara for about 3 months while on steroids and it didn't work for me. I am really hoping and praying that Simponi works for me so I can get off these darn steroids! My insurance paid for the Sterlara at 100% which was $16,000 for one shot and now I pay $69 co-pay for the Simponi which was $8,500 for 3 shots. I'm staying really positive that Simponi can put me in remission and soon!
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On Imuran 250mg and Humira
07-14-2013, 11:54 AM   #8
smallfry
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Thank you for the replies everyone!! I very much appreciate the feedback

He is looking to switch me because my Humira is not working like it used to. I rode the remicade train already so he is saying Simponi may help me. I do not see him till the end of the month to find out more.

lgpcarter, how was your appointment?
07-14-2013, 08:32 PM   #9
lgpcarter
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It was okay. Decided to stay on Humira weekly and add Cipro and Flagyl. Surgical consult for my fistula, though that will take a while. Doing my best to avoid Prednisone and I actually have been feeling a bit better since. Don't know if it is the antibiotics or Humira finally kicking in after three months. Doc mentioned "he might be able to get his hands on some Simponi" but it sounded like a bit of a pain in the ass, so I didn't pursue it.
08-31-2013, 11:13 PM   #10
Txladi29
 
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Small fry, how is the Simponi working for you?
I'm to start it in the next week or so for my UC. i'd be lying if i did not admit to being a little nervous.
03-28-2014, 05:49 PM   #11
Linn
 
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Hello all,

I was loaded today on simponi 200mg in an attempt to avoid ileostomy.

Anyone able to share their dosing schedule and experiences?

Hoping everyone is feeling well!!
04-01-2014, 06:59 PM   #12
smallfry
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Hi Linn,
Glad you posted to keep this thread going. I never started Simponi and am off Humira now. I've decided to get a proctocolectomy and make my diverting loop permanent. I wish you all the best with simponi!!
05-01-2014, 05:46 AM   #13
lgpcarter
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Update on my experience with Simponi after 3.5 months -

Started January 2014 with the 3 loading doses of 200 mg and then moved to 100 mg bi-weekly. It definitely helped, but was still getting break through symptoms just before and after injections, which is also what happened to me with Humira.

Decided at the end of March to do a "short course" of Pred to try to get me over the hump and into remission, as CRP was still at that time. Did two weeks at 40mg, and tapering 5 mg every two weeks. Now at 25 mg of Pred.

Did my Simponi injection on Monday and still having more D and a little more pain than I want. Saw GI yesterday and have moved Simponi to every 10 days and going to keep tapering the pred.

I think we both feel that it is not working for me, but wanting to give it the best try we can before we make the leap to Stelara, which is pretty much my last option.

I wasn't terribly confident that Simponi would work for me given my response to Remicade at the beginning of 2013 and how Humira also didn't work, but it was worth a try for sure. I am happy to answer any questions anyone has about Simponi. Your dosing may differ as they haven't figured out standard dosing for Crohn's yet.
08-06-2014, 11:49 PM   #14
mrkinder
 
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Just started on simponi today 200mg first injection then 100mg in 2 weeks the 100mg every four weeks . Im scared moving up to these types of medications
03-28-2015, 06:46 PM   #15
jonique
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Update on my experience with Simponi after 3.5 months -

Started January 2014 with the 3 loading doses of 200 mg and then moved to 100 mg bi-weekly. It definitely helped, but was still getting break through symptoms just before and after injections, which is also what happened to me with Humira.

Decided at the end of March to do a "short course" of Pred to try to get me over the hump and into remission, as CRP was still at that time. Did two weeks at 40mg, and tapering 5 mg every two weeks. Now at 25 mg of Pred.

Did my Simponi injection on Monday and still having more D and a little more pain than I want. Saw GI yesterday and have moved Simponi to every 10 days and going to keep tapering the pred.

I think we both feel that it is not working for me, but wanting to give it the best try we can before we make the leap to Stelara, which is pretty much my last option.

I wasn't terribly confident that Simponi would work for me given my response to Remicade at the beginning of 2013 and how Humira also didn't work, but it was worth a try for sure. I am happy to answer any questions anyone has about Simponi. Your dosing may differ as they haven't figured out standard dosing for Crohn's yet.
Hi lgpcarter,

are you still on the Simponi? I'm going to be switching to it since Humira and Remicade both don't work for me. Were you able to get your insurance approvals through your GI? I'm in BC so need to get BC Pharmacare approval first. Just wondering as it does not seem that Simponi is approved for Crohn's yet....
__________________
Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
05-13-2015, 03:08 PM   #16
honestmoe
 
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How is the Simponi working for everyone? I had a reaction to Humira ( bad chest tightness, like can't breath) so I'll be starting Simponi soon. Was curious to how it's working for everyone.
05-13-2015, 05:35 PM   #17
lgpcarter
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Sorry jonique, missed your question when you posted it. I am in Ontario and was able to get Simponi approved through my work insurance. They've covered everything except Stelara for me. I switched almost year ago from Simponi to Stelara and might be switching again soon from Stelara from Entyvio.
05-14-2015, 09:12 AM   #18
boussole
 
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lgpcarter, will you switch to Entyvio because Stelara didn't work for you or because you can't afford it?
05-15-2015, 07:04 AM   #19
lgpcarter
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Because Stelara might not to be working. I have been getting it on compassionate release from Janssen.

Back on Cipro and Flagy while I wait for an MRI and sigmoidoscopy to look into rectal issues.
05-15-2015, 09:09 AM   #20
boussole
 
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I'm sorry Stelara is not the good med for you and I hope Entyvio will help you!!! It seems to hold much promises for a lot of people here.
05-16-2015, 09:41 AM   #21
jonique
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I have been on Simponi for four weeks now. So far I have not had any side effects which is great! i had been on remicade but developed an allergy very quickly. i started the Simponi four weeks after the last remicade infusion so I had a four week overlap. during that time i was feeling "normal" and it was great, until a couple of days ago when my spondyloarthritis flared up and my Crohn's is slightly flared. it seems to me that the remicade has worn off but the Simponi has not kicked in yet. I have two weeks to go until my next Simponi injection so hopefully this does not get any worse!

Simponi is not covered by my provincial or work insurance because it is not approved for Crohn's yet so Janssen is giving it to me for free.

Fingers crossed that I don't flare up more while waiting for the next injection and also that it kicks in super fast. having that short remission was so wonderful. I want it back!!

have a great long weekend to those who have one (in Canada it is Victoria Day weekend).
05-16-2015, 10:37 AM   #22
boussole
 
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Jonique, I had the same issue when I switched from Humira to Cimzia. Humira had worn off but Cimzia took time to kick in. It was a stressfull time, hoping that it would not get any worse.

I do not know how long Simponi is supposed to take to kick in but I hope it's gonna be soon for you!!

And here in Quebec we have the long weekend but you know how Quebec is, it is called Dollard day, because Victoria day would be too England related..! En joy the weekend!!
05-20-2015, 01:36 PM   #23
jamiep28
 
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Hey guys. Im currently taking Humira and although its working for me medically I cant seem to handle the pain. My doctor says i unfortunately have a bad sensitivity to it. It has been so bad i have had panic attacks before injecting the pen. He prescribed me sedatives that I have to take before each injection.

My doctor has me switching to Simponi because I cannot continue taking sedatives. Im just waiting on insurance now to approve, however i was wondering if any of you can tell me how painful Simponi is or if not at all. Thanks so much, Jamie
05-20-2015, 03:39 PM   #24
Maya142
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My daughters have both been on Simponi and Humira. Both thought Humira was quite painful - the shot really burned. Simponi, on the other hand, is pretty painless. It's a needle, so it does hurt, but the medication itself does not burn. They found the syringe less painful than the pen, but it hurts so little that they both chose the pen for convenience (we only know this because insurance messed up and sent us syringes by mistake - for both girls!).

The younger one is 18 and on Simponi right now, the older one is 21 and was on Simponi a few years ago (now on Humira).

Good luck!! Really hope it's better than Humira for you.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-20-2015, 03:43 PM   #25
jonique
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Hi Jamie

I used to take Humira and found it painful too. It suddenly stopped working after 1.5 years. I have switched to simponi pen and i can feel almost no pain at all. Such a nice change! It seems to be working well so far.
05-20-2015, 04:24 PM   #26
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Thanks so much for your replies!! This makes me feel a lot more confident about switching medications! Im glad simponi has worked well for you guys and thanks again for your input i really appreciate it! Best wishes, Jamie
05-28-2015, 12:35 AM   #27
jonique
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I have two more days until my next Simponi injection. I'm noticing a bit of GI issue and arthritis but most noticeable is extreme fatigue. Does anyone else get this between injections?

Friday is my first regular dose of 50 mg so hopefully it will be enough and it will kick in quickly, and last the entire four weeks!
05-29-2015, 02:55 AM   #28
Toni68
 
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Hi I'm a bit worried just been told I need to increase simponi injection to twice a month.Now I know it's weight related ie 50mg if under 80kg once a month I think I'm 60 kg?.also first dsx at 44 had resection 6 mths later 2 feet of small bowel removed .Recent pillcam showed inflammation and ulcers at anastomoses site.anyone else take simponi twice a month? Thanks
05-29-2015, 03:36 AM   #29
Toni68
 
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Hi I'm a bit worried just been told I need to increase simponi injection to twice a month.Now I know it's weight related ie 50mg if under 80kg once a month I think I'm 60 kg?.also first dsx at 44 had resection 6 mths later 2 feet of small bowel removed .Recent pillcam showed inflammation and ulcers at anastomoses site.anyone else take simponi twice a month? Thanks
05-29-2015, 10:43 PM   #30
Maya142
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My daughter is on a very high dose - 200mg and is only 38kg. Her doctors are more worried about the disease than the Simponi. She was on 100mg twice a month and is now doing 50mg weekly.

She hasn't had any infections or anything like that even though she is in high school and kids are always sick. Good luck!!
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