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Anyone using Golimumab/Simponi yet?

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Ulcerative Colitis
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Posted 6/21/2013 3:41 AM (GMT 0)
I am hopefully going to be starting Golimumab next week, just waiting on the insurance company to approve it. I just went for the Hep-B test today (required for approval for Golimumab) and recently had a TB test (another requirement for Golimumab) for Humira.

I've been using Humira for the last 4 months without much improvements, I'd take a dose and I'd start bleeding again within about 3 or 4 days. Even when I upped the dosage to double doses I still did not see any real benefits in the extra dosage.

My GI says that Cimzia is very similar to Humira so he said that it was likely that Cimzia would preform the same way for me.

He was very optimistic about Golimumab, he said that the clinical results were very impressive for UC. I would be his first patient using Golimumab/Simponi for UC. I'm looking forward to starting a new medicine, because I am tired of this flare.

My GI/IBD specialist also offered me as a plan that I could use Cyclosporine (again, I've used it twice before with excellent results) or Tysabri if the Golimumab doesn't work. He said that they use Tysabri for people who refuse to have their colons removed.... I'm sorry but you can gladly have my colon and I'm not going to risk that rare brain infection that 1% of Tysabri patients get. I'm really just trying to make it to the Fall/Winter to have the surgery, I have a lot of stuff planned for the next few months and don't want the downtime with the surgery right now.

I was on Remicade for 4+ years with great results until I built up anti-bodies to Remicade. Since stopping Remicade in March I'd been struggling big time with this flare, I've been using double doses of Humira, Uceris 9mgs and steroid enemas twice a day with mixed results.

Has anyone used Golimumab? Just looking to find some Real World experiences with UC & Golimumab. Searching the forum didn't really show many results.
Posted 6/21/2013 4:52 AM (GMT 0)
Good luck! My gi offered it to me yesterday but ive declined for now since i havent had muh luck with biologics. He said it doesnt sting like humira does.
Posted 6/21/2013 5:24 AM (GMT 0)
I agree with you about Tysabri, especially if Dr. S. thinks you could take Cyclosporine again safely. Good luck with Goli; I don't recall reading any member's experience with it. There haven't been that many threads about Cimzia, either. Have you looked on the Crohn's forum? / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/21/2013 6:32 PM (GMT 0)
I was offered Simponi by a rheumatologist I visited for enteropathic arthritis, but (to be honest) she was acting like a pharm shill so I never took her up on the offer. Wish I had known then that it looked so good in trials for UC, I thought she was just trying to sell me at the time.

The risk is too high for me personally (especially knowing what I know now about my satisfaction with surgery), but the Tysabri situation has been improved a lot by the use of the JC virus test. I believe your risk of developing PML is increased 5-fold if you have JC virus, so JC+ patients have accounted for the vast majority of PML cases from Tysabri.
Posted 6/22/2013 12:49 PM (GMT 0)
The Hep-B test came back negative yesterday and TB was negative so now all that I am waiting for is the Insurance Company to approve the Golimumab. Hopefully I will start the loading dose Tuesday/Wednesday.

I took a 40mg Humira pen Thursday night because I was due for it (actually was supposed to take 80mgs), things were getting pretty bad and as of Thursday night I wasn't sure when/if I'd be getting the Golimumab.

I get the feeling that my GI is gradually pushing me towards surgery, the last time that I had an appointment with him he said that I would feel great once I had my colon removed, he said "you'll feel like this monster has been removed from your body".

I was in the hospital about 6 years ago for a flare (2nd time) and my GI asked if he could send in a surgeon to talk to me about j-pouch surgery just in case I needed it in the future. I spent about an hour talking with the surgeon, he told me about the procedure, asked me a bunch of questions and answered all of my questions and concerns....it was very reassuring.

Life and work are hectic right now, I really don't want to spend a few weeks of down-time while I have surgery, it would really be better if I could make it to October/November for the 1st surgery. I am looking forward to starting the Golimumab and I hope that it works and works quickly. I just hope that I don't wuss-out if it starts working and decided that I don't want to go for the surgery, the hospitalization and the pain.
Posted 6/22/2013 7:43 PM (GMT 0)
Then there's also a chance that Mt. Sinai will hire a laparoscopic surgeon to replace the doctor who relocated, which might make it more worth your while to delay the surgery a bit longer if you're able. I can't imagine that they would let that area lapse permanently. Good luck with your insurance/Goli approval! / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/22/2013 11:58 PM (GMT 0)
There's a woman with a jpouch on jpouch.org who takes it for arthritis and says it's really helped with pouchitis. You might ask there? Good luck, I'm glad there's more coming down the pipe. As for tsybiri I thought they were now able to check if you have the gene or whatever that will put you at risk for that? Either way, I don't know if I would want to try it but at least they can tell you if you're at risk or not.
Posted 6/23/2013 12:58 PM (GMT 0)

Old Hat said...
Then there's also a chance that Mt. Sinai will hire a laparoscopic surgeon to replace the doctor who relocated, which might make it more worth your while to delay the surgery a bit longer if you're able. I can't imagine that they would let that area lapse permanently. Good luck with your insurance/Goli approval! / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Old Hat,

I think most of the surgeries that they do at Mt Sinai are Laproscopic J-pouches, it's just that one surgeon would did it all in 1-step but he has moved to a hospital in NJ.

And July 1st Dr. S is moving to NY-Presbyterian with a new title, director of something (I forget). He is also switching practices. I have an appointment with him the that week at his new practice.
Posted 6/24/2013 1:16 AM (GMT 0)
Wow! That's BIG news RE Dr. S.! Which NYPresby is he going to? (Columbia or Cornell?) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/24/2013 11:49 AM (GMT 0)
NY Presbyterian Cornell Medical Center @ the Gastroenterology and Hematology's Jill Roberts IBD Center

The good news is that he will start taking insurance, at his last practice they did not take health insurance so I'd have to pay out of pocket and my insurance company would not reimburse me for the visits.
Posted 6/24/2013 1:50 PM (GMT 0)
Hi there! Good to hear from you again, but sorry you are in a flare. Hope the new meds work for you and that it helps until you can have surgery. Just wanted to pop in and say hi!!

Carol

Posted 6/25/2013 5:23 AM (GMT 0)
Lonie feels like I do, Keith, and let me just add that another past UC forum member, Malka, was posting when you used to be active here that she also went to Dr. Present's practice, and he saved her colon with cyclosporine. (So I hope she's still doing well.) That's really interesting about Dr. S. coming to Roberts Center, which I know pretty well! Cornell does seem to be picking up more insurance plans of late, TG. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/29/2013 3:54 PM (GMT 0)
New to the forum... I have been in the Golimumab/Simponi study for about 2 years now and it has changed my life. I was diagnosed with UC about 16 years ago, have had multiple hospital stays and have never responded well to any other medication (I have tried just about everything.) My GI had recommended surgery for years but I was not ready to go that route. I "managed" my flare ups with diet restrictions and sub par results from meds. I was skeptical when he suggested the study but was willing to give it a try. After 2 years, I am in complete remission with no diet restrictions. I don't even carry extra undergarments with me anymore. My GI was amazed at my last scope that my colon is almost completely healed and the severe scarring is gone! It has been amazing for me and I hope it is for you as well.
Posted 6/29/2013 7:04 PM (GMT 0)
nstrum - so glad that it worked for you.

How long did it take to start working?
Posted 6/30/2013 1:45 PM (GMT 0)
stealthguardian - It started working just days after my first dose. And I was in the middle of a nasty flare-up. It was like a switch had been flipped, no more constant pain or bleeding.
Posted 7/10/2013 7:33 PM (GMT 0)
Keith-- FYI, last night I happened to read an old forum thread started 2009-10 where Dr-A had posted & his signature listed participation in a Golimumab trial! So, hopefully, he is doing well 'cause he hasn't checked in here for a while. But he would likely give you good feedback. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/10/2013 8:51 PM (GMT 0)
I've been following this drug pretty closely and if my Humira doesn't work (just started yesterday after 2 years on Remicade) I will ask to switch to it.
Posted 7/10/2013 9:11 PM (GMT 0)
Old Hat,

I've been a little hesitant to post here because I didn't want to give anyone the wrong impression about the Simponi. It has worked great for me the first week but I'm suffering over the past few days but I think a lot of that has to do with partying over the 4th of July weekend (bad food and booze).

Today is my 11th days since my first loading dose. I'm still in the loading dose phase, my next dose is this Saturday which will be day 14. All the bleeding stopped almost right away and I haven't bleed since but I still have urgency and frequency right now with some D. Monday and Tuesday were pretty bad but today I am feeling great (go figure).

about 12 hours after I took my first dose I felt amazing and I actually went out did about 4 hours of shopping and errands which I wouldn't have dreamed of the past few months on Humira. I never felt good on the humira, it was a struggle the whole time.

I'm still very optimistic but the past few days were pretty brutal and today has been great (so far).

I switch my GI appointment to the 17th because I figured that I'd probably know a lot more about how the Simponi will be working going forward after the 2nd dose this weekend.
Posted 7/10/2013 10:18 PM (GMT 0)
please keep posting about how it's going- I too am not sure if my current woes are due to food & booze.. although I've tapered down the food consumption a lot, hitting the Ensure's pretty heavy! Maybe the booze??? I do love my cold wine on a hot night. I find though, my UC is about the same regardless of what or how much I eat or drink. As you know, Simponi may be my next big thing. I'll be curious though, to see if it works well for you over time- Humira has been better for me than it seems to have been for you, but not great. So Simponi is the same dosing schedule, 1 shot biweekly? Same as Humira, prefilled pens, or syringes? How long does your GI want you to stick with it, as long as it's working? Then what, surgery? Would you go for j-pouch or ileo?
Posted 7/10/2013 10:37 PM (GMT 0)
After I get to the full dose it is 1 pen every 28 days. The Simponi needle is so tiny that you don't even feel it....its about the size of an insulin, botox, Novocaine needle. 2 pens day zero, then 1 pen day 14 and then 1 pen every 28 days after that. right now it is syringe, it think they had a recall on the auto-injectors for Simponi.

I remember at the hospital a few years ago they told me not to drink Ensure because it is full of sugar and soy which would probably make my symptoms worse (I was in really bad shape at the time, lost 60 lbs in about 2 months)...they would give me Peptinex, they said it was much better tolerated.
Posted 7/25/2013 3:26 AM (GMT 0)
I've flared whenever I stop taking prednisone, Remicade worked for 3 months and then I ended up in a hospital for 10 days. Since then I've been trying AZA but when I tapered the prednisone, symptoms returned. I am worried about taking "high doses" of prednisone "long term" but not sure what those terms mean. I am on 15 mg/day and going down to 10 mg. I am very interested in trying Simponi if others are getting good results...my doc has never mentioned it. Any feedback on the cost and if its high, do they have a support program like RemiStart?
Posted 7/25/2013 3:42 PM (GMT 0)
I was approved for Simponi this week and will receive my first dose in the mail tomorrow. Remicade stopped working for me after about 6 months and I'm flaring right now, trying to get off prednisone. Hopefully this one is a winner!
Posted 7/25/2013 4:19 PM (GMT 0)
what's going on, ks? How is the Simponi working for you? Still on it? And you just saw your GI last week- what does the doctor think?

Posted 7/25/2013 7:03 PM (GMT 0)
Eva,

I am but I think there is something wrong with me besides the UC flare like C.diff (which came back negative today) or a bacteria infection (I am waiting on other test results right now). My flare feels different than a normal UC flare, lots of gas, bloating and D. It doesn't feel like the ulcers are causing the D and urgency....sorry if I am not explaining it clearly but it feels and smells almost like food poisoning type of symptoms . I'm on 60mgs of Predisone since last week and all I want to do is sleep (which isn't normal for me on Pred).

I had a really good response the first week but I don't know if my symptoms are fair to give an accurate evaluation of Simponi right now, that's why I haven't been posting in this thread too often. I did have a much better response with Simponi then I ever had with Humira. If you are willing to take a biological and Remicade isn't working for you then I'd give Simponi a try, I have no complaints about it.

Discussion with my IBD GI last week was to put me on 60mgs of Predisone, Stool tests, and maybe upping the dosage of Simponi to 200mgs every 28 days, just waiting on all stool tests to come back now before making more changes.
Posted 7/25/2013 10:36 PM (GMT 0)
KS,

I feel like I'm in the same boat as you, a different sort of flare that "feels" like some kind of infection or food poisoning. Strength is sapped, even on prednisone, which isn't working as well for me as previous flares. There's been word of pathogens in the news lately, who knows, probably worth getting a stool test done...
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