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Simponi/Golimumab
- Thread starter lgpcarter
- Start date
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.
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.
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.
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.
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.
Simponia
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.
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.
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.
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.
updates? looks like this is our new drug of choice.
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.:hug:
Hang in there carter.:hug:
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.
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
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
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?
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?
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.
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.
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.
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.
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.
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. :dance:
My daughter started Simponi and about 6 weeks later she was being scheduled for surgery. They did one last scope 2 days before her scheduled surgery and found visible healing so to hold off surgery thinking the longer she took Simponi the more healing would happen. She had 4 months of remission. Doc isn't sure if it is the antibiotic cocktail she took, the Simponi, the bowel prep, or the combo of it all that kick started remission and still won't speculate. She went from 8-10 BMs a day to 3-4 BMs. It was amazing. By Xmas she was totally off prednisone for the 1st time since diagnosis.
Now she is having accidents 2x a week, getting up 2-3x a night, and going 12-14x in a 24 hr period. Now back to soft/liquid stool I am not surprised she has accidents. Today, completely out of character she slept until 1pm. She is normally an early riser, so when she starts sleeping it is not a good sign either.
All that being said I don't want to give up on Simponi. I just wish it was enough. She does it 2x month. She could increase it potentially but once she increases it, there is no more increase after that. It is the only biologic I think D would consistently take in University, it is so easy for her to do.
Now she is having accidents 2x a week, getting up 2-3x a night, and going 12-14x in a 24 hr period. Now back to soft/liquid stool I am not surprised she has accidents. Today, completely out of character she slept until 1pm. She is normally an early riser, so when she starts sleeping it is not a good sign either.
All that being said I don't want to give up on Simponi. I just wish it was enough. She does it 2x month. She could increase it potentially but once she increases it, there is no more increase after that. It is the only biologic I think D would consistently take in University, it is so easy for her to do.
I'm starting Simponi in a couple of days after failing Humira and Remicade. Humira worked for about 18 months and Remicade did not really work at all and I'm allergic to it so only lasted four months before giving it up. Is anyone here taking Simponi for Crohn's and spondyloarthropathy? Fingers crossed that it does the trick!
Good luck on Simponi. I hope it works well for you. I am looking forward to seeing the scope results next Friday and seeing how much she still has of inflammation from her recent flare. I'm not quite ready to give up on Simponi especially since there is only 1 biologic left. But I also can't have her on prednisone forever either. She felt the effects of Simponi pretty quick, within a week. I hope you get the same response!
Good luck!
My D is still on it, but we suspect it isn't working for her anymore. There is no antibodies test so hard to know. We are currently in the hospital getting a scope in a few hours to compare her scopes in October to now. My kid is a severe case though, so don't get discouraged by her results. It is still the best biologic she has ever been on. Part of me wants her to stay on it, I just don't think it is an option much longer.
Been on Simponi 50 mg but it is not cutting it for the Crohn's. Seems to be working quite well for my arthritis though. This Friday I will increase to 100 mg.
I'm having a CT enterography on Tuesday so will have a better idea of what is going on after that. Last one was three years ago.
Hope everyone else is doing well on the Simponi!
I'm having a CT enterography on Tuesday so will have a better idea of what is going on after that. Last one was three years ago.
Hope everyone else is doing well on the Simponi!
Jonique are you doing Simponi biweekly? My kid is on 100 mg biweekly. I hope it makes the difference for you! Still by far the easiest biologic to take!
I've had the 200 mg and 100mg loading doses, at week 0 and 2. I had one 50 mg dose at week 6 and now at week 10 I'm going to have 100 mg every four weeks.
i had switched from remicade so for the first four weeks I was on Simponi I benefitted from an overlap and was pretty good. at the four week mark of Simponi, when the remicade likely wore off, things to started to go downhill and I have not been able to recover from it, crohn's-wise. Arthritis is best it's been in years.
I have high hopes that the Simponi 100 mg every four weeks will help as it is painless and so far no side effects. My GI told me when he gave it to me that it is likely that it will be great for arthritis but not so great for the Crohn's. I see him next week.
feels like that never ending story! I wish I could find the right combo and then move on with life. Good to know that there are various dosing options for the Simponi though.