HealingWell
Search Close Search
☰

Anyone using Golimumab/Simponi yet?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/26/2013 12:29 AM (GMT 0)
I did a bunch of stool tests on Tuesday night, just waiting for all the results(c.diff came back negative). Just more exhausted than normal, Sunday through Wednesday my symptoms were really bad but from last night until now things have improved somewhat but still miserable but at least it's tolerable. Really think its infection/Bacteria issue and not UC because of the smell, different type of urgency and different D consistency.

I should have another dose of Simponi on Saturday arriving via FedEx. Not sure if I want to take it until they rule out any bacteria/infection etc...
Posted 7/26/2013 7:48 PM (GMT 0)
Took my starter doses of Simponi today, will report on how it works for me. Sort of nerve wracking, like when I first took Remicade, every twinge or weird feeling I have in my body I fear is a tragic side effect of these meds. A lot of anxiety over taking these, but if they can get me to remission, its worth it.
Posted 7/26/2013 7:58 PM (GMT 0)
I hope things settle down for the both of you soon.... I know what you mean, neekap- "tragic side effect"- I just did a Humira shot on Wednesday, & am feeling super draggy & tired today, not quite right. I always attribute it to the biologics! I got very sick while on Remicade, & wound up in ICU for a week with strep pneumonia & bacteremia. Ever since then, every time I take a dose of a bioloigc I always get a little freaked out. I'm anxious to hear how your tests come back, ks. It's always something, eh... rolleyes
Posted 7/26/2013 8:05 PM (GMT 0)
Is there a sense of how soon these side effects come after taking a biologic dose? Would it be within days, or could you be weeks out from your last dose and develop something serious?
Posted 7/26/2013 8:51 PM (GMT 0)
Neekap,

I'm not a doctor and it's probably a better question to ask your prescribing doctor but I think most side-effects happen within the first few days but there are others that may "creep up" on you over time like when I started to get anti-bodies to the Remicade and came down with "Serum sickness" but that was very slow and went away after I stopped the Remicade.
Posted 7/26/2013 9:02 PM (GMT 0)

Eva Lou said...
I'm anxious to hear how your tests come back, ks. It's always something, eh... [img]/community/emoticons/rolleyes.gif[/img]

They are telling me that they expect all the tests will come back negative, if the cultures don't grow within the first 48 hours then they are usually negative but it could take up to 5 days.

I still think there is something wrong with me that isn't UC but the good news is that I've been feeling pretty good today and yesterday wasn't too bad. My GI on Tuesday asked me "how many average BMs are you experiencing the last few days, 10 or more?" I said that I stopped counting.

My goal right now is to get healthy enough to get off steroids and to get ready for surgery. The healthier I am the easier this surgery should hopefully be....I am done with this disease.
Posted 7/26/2013 9:28 PM (GMT 0)
yeah   I wish there were a "thumbs-up" for your post! I hear you, done with this disease... it does get tiring!
Posted 7/27/2013 12:32 AM (GMT 0)
Sorry you're dealing with a setback, Keith. I hope it resolves soon. Can you get your test results via Cornell Connect now? BTW, I found out what Dr. St will be directing there, interesting. He's on LinkedIn! (Seems that he's heavily into football as a side.) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/30/2013 6:56 PM (GMT 0)
I was in the trial for golimumab for 12 months (think it was 12). First 6 weeks were done like a remi infusion would be done through an IV. Last part of the trial was with the pins in the abdomen. I know once I switched to abdomen things started to go downhill. If symptoms worsened you got switched to the real thing in the trial. I had no change after being switched to real meds with same delivery method.

Method of delivery was big factor in my case. Of course it was first biologic I had been on and I was dealing with a 10 year severe flare, so don't know if that made a difference. No side effects I know of. Wife got pregnant while I was on it.
Posted 7/31/2013 1:33 AM (GMT 0)

Old Hat said...
Sorry you're dealing with a setback, Keith. I hope it resolves soon. Can you get your test results via Cornell Connect now? BTW, I found out what Dr. St will be directing there, interesting. He's on LinkedIn! (Seems that he's heavily into football as a side.) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Old Hat,

I am feeling much better the last 2 days; I took a shot of Golimumab over the weekend and along with the 60mgs of Predisone and things are starting to be much better (total brain fog from the Predisone and the flare). I'm thinking about taking Thursday and Friday off of work just to get some energy back and clear my head.

The flare was so bad last week that Dr S. recommended that I consider going into the hospital for Cyclosporine or IV Steroids....I declined because I wanted to see how the next shot of Golimumab was going to work for me (thankfully things are improving rapidly). I really don't want to go back into the hospital unless it is for surgery, it seems pointless to me to continue this way.

Dr. S recommend a surgeon at the NYP Cornell IBD Center to me but the surgeon doesn't accept my BCBS insurance so I am switching to Oxford this week but that will take about 45 days to go through before my new insurance is in effect. The surgeon has great credentials but I'd like to meet him and see if like him, his rates are $700 an office visit so I'll let my new insurance company pay for it.

I really liked his new office and the Jill Roberts center, it is very well run and efficient but at the same time very relaxing. The best thing is that he now accepts insurance so all I have to pay is a co-pay for his visit and not pay 100% out of pocket for his office visits.

Right now I don't have too many options, I've gone through all the available medications except for Cimzia (which I am not too interested in) and I really don't want to use a clinical trial medication so it looks like surgery will be my outcome sooner then later (I'm actually looking forward to it)....I'd like to get off the Predisone first before the surgery and hopefully the Golimumab will allow me to do that.
Posted 7/31/2013 1:35 AM (GMT 0)

Old Hat said...
Sorry you're dealing with a setback, Keith. I hope it resolves soon. Can you get your test results via Cornell Connect now? BTW, I found out what Dr. St will be directing there, interesting. He's on LinkedIn! (Seems that he's heavily into football as a side.) / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Old Hat,

All the Stool cultures came back negative yesterday....Stupid UC.

I have an app on my phone that monitors my UC symptoms and last week my QOL score was down around 5.3 but the last couple of days it is up to 7.6. I'm usually around 7.5-8 the last few months. After my loading dose (200mgs of simponi) I was at 8.6 for my QOL.

Post Edited (ks1905) : 7/30/2013 7:45:39 PM (GMT-6)

Posted 7/31/2013 1:42 AM (GMT 0)

Dr-A said...
I was in the trial for golimumab for 12 months (think it was 12). First 6 weeks were done like a remi infusion would be done through an IV. Last part of the trial was with the pins in the abdomen. I know once I switched to abdomen things started to go downhill. If symptoms worsened you got switched to the real thing in the trial. I had no change after being switched to real meds with same delivery method.

Method of delivery was big factor in my case. Of course it was first biologic I had been on and I was dealing with a 10 year severe flare, so don't know if that made a difference. No side effects I know of. Wife got pregnant while I was on it.

They recommend injections in the leg or arm now but you can do it in the abdomen too. My GI did not want to increase my dosage to 200mgs a month because he said there wasn't enough data on it. I did have the best response on the loading dosage of 200mgs and was hoping that I could up my dosage to the 200mgs but I'm on 100mgs every 28 days and 60mgs of Predisone instead (ugh).
Posted 7/31/2013 2:06 AM (GMT 0)
Glad to hear that you don't have anything infectious/parasitic going on, whew! RE Roberts Center: from what I read over the weekend, Dr. St is in 1305-- whereas Roberts itself is located in 1315. But it's likely that 1315 doesn't have enough room for him to settle in there right now. That's where I go, and it's usually frantically busy-- so I'm happy for you if Dr. St got a more tranquil location. Eventually the Roberts IBD staff will all relocate to a bldg now in the planning stage. That's what I heard last winter from a very reliable source. RE your insurance change: I had trouble with BCBS decades back so that leads me to think it has long been problematic in NYC! / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/31/2013 3:13 PM (GMT 0)
Good luck ks1905- I kmow exactly that feeling of being fed up and done with the DD, the med merry-go-round etc... I had surgery 3 mos ago and am sooooo glad that I didnt cancel it a second time- Life is good and it will be for you too. You can have surgery safely even kn high dose pred (it is quite common) but getting to a low dose or off will certainly speed your recovery, since tissue heals slower on pred.
Posted 8/31/2013 8:38 PM (GMT 0)
Hi there! I'm new to this forum, but not UC. Have had it for 20+ years. Lialda has held it in check for the past 7 years, except the pain. I've always got a burning in my left abdomen. Finally fed up with the pain pill band aid. I'm starting Simponi as soon as insurance comes through. Should be next week. Can you tell me how your experience was? I hate shots... So that is my fear. But not enough to stop me from trying.
Posted 8/31/2013 8:38 PM (GMT 0)
Hi there! I'm new to this forum, but not UC. Have had it for 20+ years. Lialda has held it in check for the past 7 years, except the pain. I've always got a burning in my left abdomen. Finally fed up with the pain pill band aid. I'm starting Simponi as soon as insurance comes through. Should be next week. Can you tell me how your experience was? I hate shots... So that is my fear. But not enough to stop me from trying.
Posted 9/19/2013 9:50 PM (GMT 0)
Curious how those of you on Simponi are doing. My boyfriend is going to be starting his loading dose tomorrow (but for treatment of cuffitis). He has failed many treatments in the past few months and we are hopeful that this is the one that will stick.
Posted 10/10/2013 2:04 PM (GMT 0)
I have been mostly in remission for six years following a hospitalization and cyclosporine infusions.
Then cyclosporine pills for several months, then azathioprine, colozal and later some lexapro kept me mostly in remission for six years. Lately I have flared badly and am now on third week of uceris, which is helping.
My GI is suggesting that I taper off the uceris at the end of 8 weeks and try Simponi. So I am very interested in hearing about others experiences with Simponi, side effects et al.
Posted 6/30/2014 2:28 AM (GMT 0)
Hi everyone. I've been on Simponi 100mg monthly injections for about 10 months. I've felt better than I ever had. I've noticed that it tends to wear off at around 3 weeks with me. The last week of the month, I have a cramping and a bit of pain, but within hours of taking my injection, I'm feeling much better.
Injection does not sting very much. Only twice has it really stung. (Both times, it was really cold.) I've not had any secondary infections and I travel quite a bit for work. I'm very careful about washing hands, sanitizing, and trying to avoid any one who is ill.

If anyone has questions about it, let me know.
Posted 10/25/2014 12:42 AM (GMT 0)
Hello All, new to the post. Was on Remicade for 3 years before it stopped working for me over a year ago. Been struggling this past year, took Humira and it didn't work for me, just started the loaded Dosage of Simponi 3 weeks ago. Haven't seen much improvements yet, can anyone comment on how long it took to start working for them? UC left side for 6 years, tried almost everything! Thanks...

Post Edited (Doublem) : 10/25/2014 7:13:42 AM (GMT-6)

Posted 1/30/2015 3:46 PM (GMT 0)
Hi guys, I'm new to this forum. Here's a little about me...

-diagnosed with UC in 2011 and started on Asacol 400mg tablets (3 tabs three times a day)
-kept getting flare ups so switched to Mezavant 1200mg tablets (4 daily) and also started azathioprine in 2012 (eventually was taking 150mg daily), but this didn't help with controlling my symptoms so azathioprine was stopped after 9 months
-started methotrexate in 2013 (25mg weekly) but this didn't help either and made me feel very sick, so it was also stopped after 5 months
-been taking Mezavant ever since with several prednisolone courses

I have recently signed up for the Simponi trial. They took several blood tests and a chest xray. Had my first dose a couple of weeks ago (200mg). I started to notice a difference after 2-3 days, with toilet visits reduced and bleeding stopped. Im due to have my second dose on Monday (100mg) amd then it will be 50mg every 28 days.

It is very simple to inject the dose. It comes as an auto injector. I hardly felt the needle, and no side effects either afterwards. My first dose was injected into each of my thighs (I think this is the easiest place to inject).

I hope that my symptoms continue to improve and then maintained. I will keep you all posted.
Posted 5/9/2016 10:40 PM (GMT 0)
I have had the first 3 doses of Simponi and am due for the 4th tomorrow (28 day). I was just wondering how long before I see results? Still going and bleeding in the evenings. Still taking Imurin and Lialda.
✚ New Topic ✚ Reply
12