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Crohn's Disease Forum » Treatment » New medicine AMG 181, experience?


 
05-06-2013, 04:46 PM   #1
Maudddy
 
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New medicine AMG 181, experience?

Heej

I just got new information about a new medical trail I'm probably going to start with. Only on the web I can find only trail-information. which I already got from my doctor. But I'm looking for experience.
So I hope to find someone who also follows this trail. It's for a new medicine AMG 181 (what a name right?) which would only work on stopping the white blood-cells(immune-system) in the intestines. and no were else.

Thanks, Maud
05-06-2013, 04:50 PM   #2
Jim (POPS)
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I don't know anything about this but PLEASE keep us posted on your treatment.

Jim
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05-09-2013, 09:21 AM   #3
nogutsnoglory
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Do you have a link to the trial or info on the study?
05-09-2013, 09:36 AM   #4
Maudddy
 
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I'm sorry I'm not allowed to post the links or something
I have them, yes
05-10-2013, 08:29 AM   #5
Catherine
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Is this the one.

http://clinicaltrials.gov/ct2/show/NCT01164904
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-10-2013, 08:58 AM   #6
Maudddy
 
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yes, but than the trail for Crohn
06-30-2013, 03:27 PM   #7
Maudddy
 
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Heej, just an quick update.

last Tuesday I had my first shots.
it were 3 shots, this because the highest dose you can get in the trail only fits in 3 shots, so doesn't matter what dose you get, you get 3 shots.
The down site of this medicine is that you can only notice a diverance after 8 weeks, so I won't know for now if it does something. witch sucks because my crohns is really bad at the moment.
the 8 weeks thing is because AMG 181 stops the white blood cell to be able to get to the bowels, so the can't diffuse to the bowels, and if that is stopt, they can't harm the bowels any more. so they get the time to heal, and this proses happens in 8 weeks. so we will see.

Still hope to come in contact with more participants.

xoxo Maud
07-09-2013, 02:41 PM   #8
gemmajane89
 
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Hi I am looking at being started on this drug in 8 weeks time. Got to wait foe humira to be out of my system first. How are you finding it? Im feeling a bit nervous about the prospect of being quite ill before starting it. Been signed off work for 8 weeks.
07-11-2013, 06:34 AM   #9
Maudddy
 
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heej, I have never been in a 'good' period, so it wasn't any different for me to have a 'clean' period. The thing for me is that no medicine has bettered (? hope that is a word) my Crohns. So that was not really something to think of for me. My crohns is only getting worse now but for the medicine to take effect that also takes about 8 weeks. so hope this will finally be the answer for me.

Nice to finilly hear from somebody who has heard of the trail en is going to participate. Hope to hear from you how it goes with you! Good luck.

I have had 2 doses of the medicine now, not feeling any diferent but that is normal.
Maud
07-11-2013, 07:21 AM   #10
rollinstone
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I'm not entirely sure, but I think this could be the same as the GSK trials just named differently because in a different country. I hope it works and you feel good very soon. Please keep us updated
07-12-2013, 09:58 AM   #11
gemmajane89
 
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No I havent had a well period either so I am hoping that this will be the drug that will get me into remission. Have you got facebook or a personal email address so it will be easier to communicate? Will be lovely to keep in touch with someone who is on the same trial. X
08-22-2013, 05:12 PM   #12
Maudddy
 
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Sorry for the lack of updates.

have been on holiday for the last 3 week. It's nice to have that time to relax and enjoy the summer weather.

I have past the 8 weeks mark for 3 days now, the doctors give me 4 more weeks too react on the medicine, if I don't I will be transferred to the open label part of the trail. I haven't had any reaction so far. I am only getting worse and worse so I am happy that they have that transfer possibility. because in earlier studies I participated in they just trow me out of the trail.

They gave me some sort off mobile phone dairy thingy that I had to answer questions on. But I am happy to say that after the 8 weeks I don't have to do that any more.

For my next appointment I am going to have an extra calprotactine test done, so one for in the trail (I don't get the results of that) and one for myself. my last one 4 weeks ago gave a count of +1800, so I am curious what will happen with that.

xxx Maud

ps. https://www.facebook.com/maud.kouwenberg?ref=tn_tnmn
(hope this link works)
08-23-2013, 01:30 AM   #13
rollinstone
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thanks, that sucks you haven't noticed anything there is a good chance your on the placebo though so just hold tight, hopefully the open label will start having better results
08-23-2013, 03:50 AM   #14
Maudddy
 
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I hope so to!
jep there is a big change I am on placebo, something went wrong with the lottery (?) and the changes are now 50/50!
Do you have a link to the other trial? are you on that?
09-04-2013, 10:31 PM   #15
cod
 
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Hi Maudddy. Just wondering how you're doing now. I should be starting on the clinical trial for AMG 181 in about six weeks. I tried Humira but it didn't do anything for me. I'm sort of banking on this one.

And gemmajane89, you ought to be starting fairly soon, too, yeah?

It'd be nice to keep in touch with others on this trial.
09-05-2013, 03:37 AM   #16
gemmajane89
 
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Hi. Yes hopefully in the next month. There was some problems with the distribution so it got postponed. I am banking on this one working too because humira didn't work for me either. Lets hope it makes us all better!! Let me know when you start it an how you get on.
09-18-2013, 10:37 AM   #17
Maudddy
 
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Heej Heej
Well yesterday was my 12 weeks mark, so it was time to decide if I reacted to the medicine. I didn't, so from now on I'm in the open label part of the study.

It was a long visit this time because they first needed my blood clotting numbers (don't know if that is a correct translation) and after they got that back they called the pharmacy to make the medicine ready. But first it had to defrost, and then they could make it. so that was about 3 hours later. and a lot of blood emptier

I don't know I you guys also participate in the surrounding studies? that when you give up a little more blood and stool for them to do extra studies on. (that's why I gave like 12 tubes of blood)

okay but keeping with the story. The open label part means that I get 210 mg once every 12 weeks. so for now I have a check up in 2 weeks, then 4 weeks and than 6 weeks later I get the medicine again. I haven't noticed any side effects form yesterday, so that is good!
Also I asked around about the study and my hospital has 8 Crohn patients on it. and most of them all went to open label.

I am curious how you experience the shots, I don't mind them at all. but maybe that's because it is shot by hand, not automatically (like insulin shots)

And now about my Crohns, it really is getting worse and worse. and I can't really expect anything from this medication any time soon, so I'm getting a feeding tube again this friday. hope it will get me through winter and the cold!

Hope everything is going good with all of you!

xxx Maud

(hope you will correct me if I say something weird Than I can even learn from this, English final exam this year so..)
09-19-2013, 05:26 PM   #18
cod
 
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I'm sorry that your Crohn's is getting worse and that the drug hasn't done anything as of yet. Hopefully that will change. Do you happen to know what dose, if any, you were getting on the closed label run?

I still haven't started. I think it'll be another month or so before I can. I'm willing to do some of the additional studies as long as they don't demand too much as far as going to the hospital more often or things like that, as I'm in college a good 6+ hours away from my hometown where I'll be based for this trial.

(P.S. I'd say your English is pretty good. Better than some native speakers, hah. Good luck on your exam.)
10-20-2013, 12:10 PM   #19
echotor
 
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Mauddy, can you update your AMG 181 experience? Anyone out there on the Phase II AMG 181 double blinded study for Ulcerative Colitis?
10-21-2013, 06:24 AM   #20
Maudddy
 
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Hello Echotor,
are you also looking to start this medicine? I haven't heard of anyone with Colitis starting this trail. Hope you will find someone who can help you.

I'm now in my 5th week of the open label trial part. So far still no changes. I still have my NG-tube, and this is working for me! I'm putting on weight, and have more energie to keep warm and go to school. It has never done anything else for my Crohn, so still in allot of pain. Hope to notice something from AMG181 soon!

xxx Maud
12-11-2013, 01:35 PM   #21
Maudddy
 
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Heej,
now 12 weeks further since I started with Open Label part. So it was time again to go to hospital again for a check up. this time I again got the medicine. Normally they would reccomand to stop the trail if you haven't had a reaction after 12 weeks. But because I know of myself that I react slowly to medication, we decided to keep with the trail for a little bit longer. we also decided this because there really isn't anything else to try.

In two weeks I got a call appointment (?) with my doctor. and see what there is for me if this will not work. (maybe any suggestions?)

I again asked if they would test my calprotectine. hope to hear that when I talk to my doctor. If there is improvement I think I will try this for a little bit longer.

Anyone started yet? hope all goes well with you guys!

xxx Maud
12-14-2013, 12:40 PM   #22
cod
 
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Hi Maud. Thanks for the updates. I guess you'd probably say if it had stared working for you. Have you tried humira previously? Or 6MP?

After many delays, it looks like I might finally start the trial in two weeks (the day after Christmas will probably/hopefully be my first dose). Question: is anyone else doing this trial on prednisone? I was asking the person in charge of the trial here about trying to taper once I start the trial and she seemed to think I wouldn't be able to for six months. I hope that's not the case, and I'll talk to my GI to get his opinion. With humira he wanted me to try tapering almost immediately. Anyone else attempting to taper any other meds during the trial? Is that allowed?

Anyone else started?
01-31-2014, 09:15 PM   #23
Kerdan
 
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I am new to this site. I am also going to be starting the trial study of AMG 181. I am told that in two weeks I will begin. Everything sounds very similar to Mauddy's trial. My condition right now is not good, the doctors have told me I can take a minimal dose of prednisone to try to slow down symptoms but in doing that it will slow down the study. If anyone else is taking this drug, any or all information would be appreciated.
02-01-2014, 09:55 PM   #24
Donjh
 
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Maudddy any updates are you doing better?
02-11-2014, 02:04 PM   #25
Maudddy
 
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Heej, long time no update ,
still no progress on my end. Hope others on here have better results!
I had a MRI last saturday, don't know yet what there was to see. Probably nothing, because that's me, MRI's and stuff never show anything, they could just as well be looking at the bowels of a "healthy" person.

Back to topic. I'm still on the trail because where I live there aren't any other options for treatment. Think I will be looking at stem-cell treatment, but only after I'm done with my finals.

Hope too hear from other soon!
xxx Maud
02-11-2014, 02:18 PM   #26
Trysha
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Hello Mauddie
Sorry to hear you have had no progress with regard to the trial drug.
Perhaps your MRI might show some improvement.
Your English is very good but just one note--- the word is "Trial" and not trail for testing out a substance or drug.
The word trial can also be used to describe an ordeal that must be endured.
A trail is a pathway such as a trail through the woods or an oil leak leaving a trail in the road----etc.
Good luck with your exams, I am sure you will do well.
Hugs and best wishes
Trysha
02-12-2014, 04:11 PM   #27
Maudddy
 
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OMG, thank you for that, I understand now. Maybe it still will go wrong some times but I can blame that on my dyslexia.
03-13-2014, 08:41 PM   #28
Kerdan
 
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I have colitis and have just started taking AMG 181. I am only in the second week and have only had two treatments of the drug but my symptoms are improving (this is also a trial study). I am hoping this will work and will become an available option for treatment. I believe this drug is also administered through IV but do not know anything else it.
06-27-2014, 05:15 PM   #29
johnny26
 
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Hey guys,

I have UC and am currently on the AMG 181 trial. Currently in week 7. I have had no improvement so far.

Hoping this is to be my saviour as no other treatment has worked.

Has anyone had good results with this post 8-12 weeks?

Last edited by johnny26; 06-27-2014 at 06:26 PM.
06-28-2014, 07:47 AM   #30
Kerdan
 
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Hi Johnny,

I was in the AMG181 study and had no improvement, sorry. After 8 weeks I went into the open label portion, received the full dose and had no results, so I have been out of the study for just over a week (by having to get back on prednisone and more). I believe others in the study had positive results so keep hoping.
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