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Golimumab Study Starting

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Posted 12/24/2008 4:20 PM (GMT 0)
TaylorB, other than a 6 week course of prednisone last summer I have been off all UC medications since last March. I had my colon removed October 20, 2008. Since surgery I have been taking Lomotil.
Posted 12/24/2008 6:09 PM (GMT 0)
Hi Paul, Hi TaylorB...

Paul, I'm doing the Golimumab study at Sunnybrook under the care of my Gastro, Fred Saibil (great doc). I'm sorry to hear that you had no results from the studies you've been in. As TaylorB asks, are you still on meds/studies even though you've had surgery? What happened?

Taylor, It's interesting to hear how your husband is doing and how the 'no bright red blood' has happened. I have actually had a diminishing amount of that too, so maybe something is working- be it ever so slowly. I hope for the best for him.
I can't believe your story of no meds and less disease- that's amazing! I have always questioned the real benefit of some of these drugs - especially Prednisone- with all the side effects etc. That is great for you - now if only those 2-3 days a week would go away! I'll watch the hemoglobin count - thank you and please do keep in touch about the 2 of you when you get back too email.

Wishing you all a happy holiday and a healthy, great new year!

Eliza
Posted 12/27/2008 3:36 PM (GMT 0)
Just update. Last 4 days, trips 4, 3, 4, today 1. Last three days formed larger bm's. More formed than last 7-8 months, no blood 3 days.
Posted 12/30/2008 2:58 AM (GMT 0)
Two week appointment tomorrow. Last 3 days, 3 and 4 bm's still no blood and formed stools. Last 6 days haven't had that formed stool followed by looser stool afterwards. Able to sleep in longer without my gut making me get up. Overdue for the bad day now of spasming gut on the toilet all morning.

How are the rest of you study folks?
Posted 12/30/2008 3:02 AM (GMT 0)
I have pancolitis and also get the post BM spasms and for hours and hours some days
Posted 12/30/2008 3:45 PM (GMT 0)
Dr A,

Sounds like you're doing great- congratulations! Do you attribute this to the Golimumab? I'm in the second phase and believe that I got placebo in phase #1 (just hoping, because nothing happened) and now so far I've been given 2 doses of actual meds. Haven't seen much change though- still around 15-20 trips to bathroom- most through the night. Not a lot of blood at all though so maybe that's a sign.

Eliza
Posted 12/30/2008 3:48 PM (GMT 0)
Hang in there ElizaLily! :)
Posted 12/30/2008 5:24 PM (GMT 0)
Thanks, BBC!

Eliza
Posted 12/30/2008 7:02 PM (GMT 0)
Yeah, nothing else has changed. Saw immediate changes, but it took a week to be consistent. One trip to bathroom today. Got up drove 40 minutes without worrying about going to toilet also. Appointment went fine.

My next trick is a quick pred taper. They want me to keep taking it for 3 more months but there is no way in L.
Posted 1/2/2009 5:58 AM (GMT 0)
Dr.A
Please post your daily food and liquid diet.The vitamin E enema is only effective with a proper diet.
Posted 1/2/2009 1:54 PM (GMT 0)

sheldon33132 said...
Dr.A
Please post your daily food and liquid diet.The vitamin E enema is only effective with a proper diet.

What? Quit copying and pasting sheldon, lol. You know I hate that.


Anyway, I am still waiting for that bad day. Haven't been to bathroom more than 4 times in a day since Dec. 22nd. Mostly between 2-3 within a 60-90 minutes of getting up. No visible blood since 22nd either. Big ole formed stools, no mucous. Can expel gas without fear, :O

Just hope it holds till I get to the next phase where I can get the stuff subQ. Next visit is on 17th, next sig scope is on 30th i think. I'll be curious to see the sig scope and if still feeling well compare it from the previous one I did three weeks ago.
Posted 1/2/2009 2:47 PM (GMT 0)

Eliza Lily,

Sorry i havent been in touch.  the study coordinator for my study is monitoring this site.  i  am very upset and feel he has taken healing well away from me.  i would like to email you privately.  i dont know how to arrange that though.  i think the moderators monitor the posts and if you agree, they may help us by letting us know what to do.  i hope you are up for this.  i think about you every day.

Posted 1/6/2009 12:34 AM (GMT 0)
Hi TaylorB,

Yes, of course, let's communicate outside the forum. I'll handle it any way you'd like ie. getting in touch with the moderator- hi there- can you help?! The fact that the study coordinator is influencing you at all is concerning. Shouldn't you be allowed to get support wherever possible? I hope you're doing well- I had a very rough night last night and I'm having one of those days where I am crying a lot. I really hope that the next injection starts to show progress. I'm pretty worried. How is your husband?

I hope the moderator will help us keep in touch.
Posted 1/17/2009 1:34 AM (GMT 0)
This has still went well. Sig scope in a couple of weeks to finish this part of study out. Have had one day of 7 bm's since the initial week. Typical around 2-3, 1 yesterday and 1 today. Felt a little crappy over last week, so it may be wearing off. They say the injection for treatment would be every four weeks, so that puts me in this timeframe. 52 week portion of it coming up next.
Posted 1/17/2009 4:56 PM (GMT 0)
eliza lily (et al)

well i thought the moderators would contact us...but since they havent and i want to be in touch with you i will update here. 

let me start by saying that we are terrible...sorry to complain, but we are doing so so badly.  my husband is going 15-20 most days, like you are.  and he is working. (with little sleep obviously)  i am so at my wits end for him...and he was diagnosed with severe sinusitus and bronchitis.  but he is on a antibiotic for that and some liquid stuff.  but the UC is so out of control. 

with regards to my husband, he is supposedly guarenteed 100 mg's of golimumab on the roll over part of the study which for us should be feb 1 or so.  that is the smallest testing dose.   which is probably what you are on being that you also showed no change  in the first part of the study.  from what i read in your posts, you are not being helped by that low dose 100mg's.  the study tests up to 400mg's.  seems like the sickest people should get that not the least like you are. 

so my fear is that like you, my husband wont respond to the 100mg's.  and i dont know how long he has to stay on that dose before getting bumped up in the study...but i will find out on monday when i next go in.

i unbelievably fell on the ice and broke my ankle last sunday.  i was operated on, and hospitalized for 3 nights.  this is terrible PLEASE EVERYONE FEEL TERRIBLE FOR ME!

i have a steel plate and 5 screws and some other stuff AND something called fracture burns  that are so painful. 

i am on big drugs that only help minimally and are screwing  with my stomach and  UC.  I am going to the bathroom at NIGHT!! which is so hard to do with the pain in my ankle and the drugs making me dizzy it all seems so dangerous. 

i talked to my study coordinator last time and he thinks i too have showed no changes, so i will also be getting that 100 mg dose of drug.  it might maybe do something for me as i am not as bad as you and my husband.  i go between 3 and 8 or so times a day.  my blood is variable from week to week. 

i want to complain and complain and complain!

 

Posted 1/17/2009 6:25 PM (GMT 0)
Taylor,

Oh my!! I feel so badly for you and for your husband. What a crazy, rotten time for you - for us!! My mom is very supportive and encouraging and when I feel really down, she tells me that there are great times ahead. I think back at my previous bad flare (around 7 years ago) and how I finally got through it, and had a great 6-7 year run of good health and productivity. Your ankle injury is just ridiculous! On top of running to the bathroom, you have to worry and deal with the pain of that!! I feel for you, I really do. I'm so glad your flare is not too bad though. When I was pregnant with my daughter, 13 years ago, I had a mini flare, felt terrible and would occasionally go to the bathroom to poo and I'd have to throw up as well- at the exact same time! How do you do that? It was overwhelming...as I'm sure what you are going through is. It will all get better though, it really will.
Regarding the study, I think you have all your facts correct. I'm certain that I was on placebo initially - or a dose that was too low. Now, I am in the second phase as you said, and I know I'm getting 100 mg's and I'm seeing very little change, if any. Last doctor appt, he said if my hemoglobin is still going lower, he's taking me out of the study and we'll have to look at other (very limited) options. He's signed me up for Remicade but it still has yet to be approved. I don't understand why I can't get a higher dose of this study drug, wouldn't that make sense? I'm going to see if that is an option. I'll let you know what I find out and I hope you can tell me what you hear.
Take good care of yourself - and your husband. I hope things turn around soon.
E
Posted 1/28/2009 10:07 PM (GMT 0)
Second phase of study started today. 52 week version. Had sig scope also. Doc said about 10% better. Symptoms did start to return at the end so because of that for the second portion I get to start at 100 mg dosage. If I were to have stayed at the level I was at at my last appointment, I could have possibly got placebo. Funny how that happened. Anyway, got the SQ injections into the abdomen. Didn't hurt. We'll see how this goes. I was definately pleased with the last 6 weeks.
Posted 1/28/2009 10:30 PM (GMT 0)
I'm sorry TaylorB and Elizalily....were you asking one of us as mods to help?  If so, you can always go to the top corner of our profile and click on the email button to email us. If you'd like to communicate other than posting on the board, you can go into the UC chat room and chat away there. I apologize; we try to read as many posts as we can, but guess we missed this one. Let me know if there is anything else I can do by emailing me.

Posted 2/8/2009 10:36 PM (GMT 0)
eliza lily,  i emailed lonelylane and gave her my email address.  i couldnt reach her until i was actually logged on at healing well.  at that point her email icon became active.  if you email her, she will give you my email address.  i look forward to hearing from you.

taylorb

Posted 3/4/2009 3:50 PM (GMT 0)
So, after having two of the SQ versions of the drug my conclusion is the injection is much better. Really haven't noticed a difference with the SQ stuff. Injection I noticed improvement within days.
Posted 3/6/2009 1:52 AM (GMT 0)

dr.a,  i dont understand what you are saying.  i though sq is an injection-yet you talk about sq and injection as though they are two different things.  please advise.

btw.  glad you are feeling better

taylor

Posted 3/6/2009 4:59 AM (GMT 0)

TaylorB said...
dr.a, i dont understand what you are saying. i though sq is an injection-yet you talk about sq and injection as though they are two different things. please advise.

btw. glad you are feeling better



taylor

Just different methods of adminstering meds. IV directly into vein, versus this little prick into my belly fat. I don't consider the prick into my belly an injectin although I know it technically is, lol. IV delivery evidently superior in treatment for my body at least. This second phase of the study is all SQ, which sucks.
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