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Crohn's Disease Forum » Treatment » Simponi/Golimumab


 
01-13-2014, 02:30 PM   #1
lgpcarter
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Simponi/Golimumab

Starting Simponi as soon as I can get it into my hot little hands! I know there aren't too many who are on it, but anyone have any injection tips to share? Did it help you? Would love to hear success stories of it healing fistulas!
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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
01-13-2014, 06:52 PM   #2
Maya142
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My older daughter has been on Simponi. She has arthritis though, not Crohn's (her younger sister has Crohn's), so I can only tell you about the injection. She's used both the autoinject pen and the syringe, and said that the injection was not painful at all, compared to Humira. She didn't even bothering icing her leg like she did with Humira because the injection didn't really hurt at all.
Simponi didn't help her much but I hope it will help you! I believe doctors use a lower dose in arthritis than in UC, so perhaps a higher dose might have helped her.
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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
01-13-2014, 07:14 PM   #3
lgpcarter
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Thank you! And I think they dose even higher for Crohn's than they do for UC. Waiting to hear about dosing. Really hoping to get it this week. Doc also said it hurt less than Humira, so that's great. I did Humira for three months, weekly for about half the time and dreaded doing it.
01-13-2014, 07:32 PM   #4
Maya142
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Is it approved for Crohn's in Canada? It isn't in the US (I think)!
01-13-2014, 07:33 PM   #5
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In the US there is also an IV form of Simponi (called Simponi Aria I believe) - that might be worth asking about. I think it is only approved for RA so far.
01-13-2014, 07:40 PM   #6
lgpcarter
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It is approved for UC in Canada, but not Crohn's. I called my insurance today, and they said they would pay. I'm extremely lucky to have excellent drug benefits.
03-28-2014, 03:15 PM   #7
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Hi IGP, what is your dosing schedule? I have CD, got 200 today and getting 100 in two weeks.

Hope you are feeling amazing
03-28-2014, 03:20 PM   #8
lgpcarter
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Started with 3 loading doses of 200 mg, 2 weeks apart. About to do my 3rd maintenance dose of 100 mg, still every 2 weeks.

Unfortunately, while I did respond to the loading doses, maintenance dosing is not quite enough to keep symptoms at bay. This happened with Humira as well.

Heading to my GI on Monday. His secretary asked me about prednisone when I called last week (boo!), and we had also talked previously about methotrexate to give the Simponi a little boost.
03-28-2014, 05:51 PM   #9
Linn
 
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Sorry to hear this do you take any adjuvant therapies or have you started bleeding badly?
03-29-2014, 07:57 AM   #10
lgpcarter
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No other treatments at the moments. Not much blood. Main complaints are mouth ulcers and fistulas.
04-01-2014, 06:29 AM   #11
goofyrn2
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This is just a tip. Simponi has a latex end. I am anaphylatic to latex. I "was" a nurse and worked hard years ago to make our hospital go latex free. Of course because of my Crohn's I no longer work as a nurse because it is poorly controlled. This particular injection does have latex contamination in it so just wanted to throw that out there. I was not able to take it but would love to hear if it is a success for you.
04-01-2014, 09:38 AM   #12
lgpcarter
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That's really good to know, thanks! I don't have any issues with latex, but I am not sure if the nurse who came and showed me how to do it told me that it was in there or asked if I had an allergy.

It is sort of working. Not quite enough to get me into remission, so started 40mg of pred today. Staying there for 2 weeks and then starting to taper.
04-01-2014, 05:03 PM   #13
goofyrn2
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Hang in there. I would love to hear how you are doing. I know how it feels to never quite get a remission. Its the pits. Crohn's is like a pendulum and you just don't know how it is going to swing.
08-28-2014, 09:18 AM   #14
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updates? looks like this is our new drug of choice.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

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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08-28-2014, 09:38 AM   #15
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I decided to stop Simponi and go for Stelara. It wasn't quite enough to get me into remission. I didn't realize how much it was working for my perianal disease until I stopped, and if I could have a do-over, I probably would have given it a bit more time.
08-28-2014, 09:50 AM   #16
goofyrn2
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Something I experienced that is apparently not uncommon by my liver specialist is folks with Crohns and PSC (diagnosed by liver biopsy) is that antibiotics can push your hepatic panel up. I was feeling horrible on Cipro and a set of labs were drawn and my numbers had elevated 4 times normal. I had not changed anything in the way of treatment except the Cipro. Now when I take antibiotics I have to have labs drawn at the beginning, mid way (if those are elevated), the end and two weeks after. This way we can determine what antibiotic are causing the elevations. Ugh. Better to be safe than sorry.
Hang in there carter.
08-28-2014, 09:52 AM   #17
lgpcarter
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Thanks! good to know. I see my doc next week, so will check about that. I find the Cipro really helps with my perianal disease, and I have been on and off it many times over the last 14 years.

Now on Stelara and it seems to be working well.
08-28-2014, 09:53 AM   #18
goofyrn2
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So glad to hear that Carter. Sometimes just trying different treatments help you find the one that helps remission. Yahoo
08-28-2014, 10:14 AM   #19
SupportiveMom
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I was just informed this morning my daughter is not a candidate right now for Stelara as she had anyphylaxis shock during a Remicade treatment & tested positive for antibodies. Thank goodness there was another choice for her. This one has to work. After this there is only one other option of a combo antibiotic treatment & then it's surgery. Glad we got a 2nd opinion as our 1st GI was out of options she was able to administer. Glad we are at the top kids hospital now to have access to this.
08-28-2014, 10:19 AM   #20
goofyrn2
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Wow fantastic. I went into liver failure with Remicadee. I can't take many of the TNF drugs due to anaphylaxis to Latex. I am pretty much out of options because of this allergy. I live on methotrexate and steriods.
I am so glad your daughter is okay. I know how she feels. Hopefully the antibiotics will do the trick and no surgery. Its good to get other folk to look at her with a fresh set of eyes. I will be praying for her
08-28-2014, 12:27 PM   #21
SupportiveMom
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Mtx did nothing for her. Imuran is the only thing that keeps her on the lower end of double digit bathroom trips. Steriods+teenage moods = a need for me to drink! If we are left with that we are in real trouble. I hope you are finding some normality with it. Surgery worth the option?
08-28-2014, 02:24 PM   #22
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I broke out in hives with Imuran. I am holding out as long as I can before surgery Supportive Mom.
08-28-2014, 02:42 PM   #23
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We are trying to hold out too. Her 1st GI for 2 years sent us for a 2nd opinion because she only could suggest surgery as the next option. I am grateful we live in a major city that has the top IBD hospital in Canada so we have access to trials and other treatments not available. I thought we were done with options before we saw her so any other options were a blessing. Where is your crohns located goofyrn2?
08-28-2014, 05:06 PM   #24
goofyrn2
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I am in the USA in the Richmond VA area. We have great university hospitals in the area and docs. I have gone to three different different hospital both in VA and NY. I did have a stem cell treatment done which did help if you can get into one of those.
08-29-2014, 12:44 PM   #25
SupportiveMom
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Really wish I saw some kids on this drug. I'm a bit concerned I haven't seen any kids on it on the forum. It is in trials here but I had hoped more info from those south of the border.
08-29-2014, 02:33 PM   #26
lgpcarter
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I was just informed this morning my daughter is not a candidate right now for Stelara as she had anyphylaxis shock during a Remicade treatment & tested positive for antibodies. .
A remicade reaction should not preclude Stelara. I also reacted to Remicade (though not full on anaphylaxsis) and went on to try both Humira and Simponi and am now doing fairly well on Stelara.

The tip of the Stelara syringe is covered by a little protector thingy that does have latex in it, so it is unsuitable for people with latex allergies.
08-29-2014, 05:16 PM   #27
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Insurance denied it based upon the Remicade response is what I am told. She had to be hospitalized during a Remicade infusion because she stopped breathing and they had to get her to start breathing again. I'm not sure what one has to do with the other but they approved Simponi so it is our new drug.
02-28-2015, 10:28 AM   #28
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Thought I would revive this thread, as there really isn't much here on Simponi. 5 months now on Simponi and my kid is the best she has been for 4 of the 5 months. She may be going through a small flare right now, and hoping we can nip it in the bud soon. I have to say it is the easiest biologic to administer, and she has been on all the major ones. It is the first biologic I can see her actually administering on her own in university when she gets there. No side effects and only needs about 10 minutes after the shot to continue on her day.

Anyone else on Simponi? So far I have only met 1 parent with their kid on it. Would love to hear others at any age with their experiences.
02-28-2015, 12:28 PM   #29
goofyrn2
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Hi Supportive mom. Glad to see your post. Since you have posted I started to get sick on the methotrexate and my liver enzymes climbed so I am off of that. I have tried many or the drugs posted here and have failed or can't take due to my anaphylaxsis to latex. I started to use the new drug Entvio and did fine until the third infusion. I had an anaphylatic reaction to it and wound up in the ER. Now I am hitting the bigger medical centers to see if they are doing any studies I can get in. Now I am out there with no coverage. Not good. But I am always glad to hear when folks have found something out there that works and keeps them in remission.
02-28-2015, 08:56 PM   #30
lgpcarter
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Glad to hear from you SupportiveMom, I wondered how your daughter was doing. She was able to avoid surgery with the Simponi, I am assuming? It didn't work for me, but was definitely the easiest to administer of the last few I have been on.
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