Remicade stopped working...now Humira. Please help

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yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 6/15/2009 12:50 PM (GMT -7)   
Im sure this question has been asked before but I could'nt find the thread. Remicade has stopped working for me after 8 months so now they want me to start Humira. Has anyone also experienced this and how did the humira work for you???


Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 10 months ago. Was on Remicade but just recently switched to Humira because remicade stopped working, B-12 injections and iron.
God Bless. Tony


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 6/15/2009 1:45 PM (GMT -7)   
Hi yellowfin, i too am in the same boat as you had a reaction to remi while having my 2nd infusion in may rolleyes on a washout period at the mo  seeing Gi next week to get the go ahead for humira Bev x 

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma
 No maintance drugs as such on B12 shots,iron syrup,loperimide, 20mg EScitalopram 4 anxiety.


craigy bhoy
New Member


Date Joined Jun 2009
Total Posts : 6
   Posted 6/15/2009 2:30 PM (GMT -7)   
hi.im a newby.ive only been diagnosed with crohns for 2 and half years but suspect its been around for a while longer.anyhoo im on methatrexate after taking azathioprine for a week before taking flu sympyoms.the meth has been stop start for a month but im worried about taking imunesuppresants being around kids alot(i take my daughter to toddlers and i pick up viruses alot)i was told by my GI that there was only limited options after these two drugs.imfliximab or an op.is imfliximab an imunesuppresant also or is it better than the previos meds mentioned.am also on 30mg predisolone and asacol to.i rattle like a smarties tube.hope to get a reply.ty

mmckenna
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Date Joined Jan 2006
Total Posts : 725
   Posted 6/15/2009 3:31 PM (GMT -7)   
"Rattle like a smarties tube". Most Americans won't get that one...

Remicade is an immunosupressant, so is Humira. Keep in mind that these are not the only drugs in this category. There is Cimzia, and a couple of others. If one doesn't work, one of the others might.
Personally, I'd rather be on one of these than Prednisone long term. I've had lots of issues from my short bursts of Prednisone, but no issues from Remicade.

I've been on Remicade since 2002, and I've not had any problems. I work at a university, and am around a lot of people. My son is 3 years old, and he is in pre-school, and he is around a lot of other sick kids. I do get the occasional cold, but no more than before I was on Remicade. It does help to pay close attention, wash hands a lot, get flu shots, vitamin C, etc.
Matthew McKenna,
Joey's dad.

Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/25/2009 5:45 PM (GMT -7)   
Hi guys! I as well have been on remicade for a year and 4 months. It no longer works for me. Though I've been reading some threads on here, currently not suffering to much with my CD only ending up in the hospital every 2 months with a flar up I am unable to handle. But I am suffering very much from arthitis. I've lost my life at 24.. unable to even open a bottle of water. I've been off of work for the last 2 years. I'm fustrated. I'm waiting for my apointment with my GI July 3rd and hopefuly she aggress to swtich me to Humira. Does anyone have any advice on how long I should feel some sort of relife of my arthitis with Humira? I would also love to start eating other things like milk which I no longer can have. I also can't gain any weight I've lost when I have my flar ups. Hope someone has advice for me how Humira

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 6/26/2009 10:55 AM (GMT -7)   
Yellowfin...you are not alone...Me and my GI are stumped too...it is so frustrating. I hope that Humira works well for you. Alas, for me, it did nothing. I guess compared to 10mgs/kg every 6 weeks, the Humira was just not as strong. I'm currently doing Cimzia. However, it too is losing its effectiveness (it runs out at the start of the 3rd week).

Because of this, I've not been able to come totally off the prednisone. Can't seem to keep the symptoms in control long enough...

Oh RA&CD...I have to take sulfasalizine too...it took awhile, but the joint issues are soooo much better...have you tried this? What does your rheummy think of it?
"The earth laughs in flowers"


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/26/2009 10:59 AM (GMT -7)   
I have the same issue with remicade, it wasn't doing it's job at every 7 weeks so I ask to be brought down to every 4 weeks, which now my body is use to, remicade has no effect on me what so ever not for the arthitis nor for the crohn's. I haven't tried the med. I'm going to see a GP tomorrow for the pain until I see my GI I will ask him about it.. see what he says. I just want my life back! Thanks for the advice I'll let you know what he says!

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/26/2009 11:00 AM (GMT -7)   
Oh btw they still haven't given me a rheummy doctor I'm still dealing with my GI for my arthitis!!! which is another very fustrating part. I will also ask to see one! Thanks again
xoxoxo

goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 6/26/2009 11:08 AM (GMT -7)   
I've never tried remicade but I've been on humira for 3 months now...it was a rocky start as I had unbelievable joint pain the first few weeks on the medication, also experienced flu like symtoms the first month as well...now after 3 months, I'm finally feeling like it has kicked in and I'm feeling better...I'm off cipro which I took prophalactically for my pouchitis and I'm down to 3mg on the entocort...after I get off that I'm hoping to stop the xifaxin...I've read where the drug can take 3 to 6 months to really help...I also have psoriasis but haven't seen that the humira has helped that much...hoping it will...good luck with humira...I for one finally see some light at the end of the tunnel!

42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 1200mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex and 1000mg of cipro
Past meds: bactrum (side effect: rash), pentasa (tried twice in a 4 week period, severe nausea, vomiting and D), levquin (ineffective), flagyl (works, hate the side effects), enemas and suppositories (ineffective), imuran- tried 2/09, landed in the ER with severe back pain and raised liver funtions....
 


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/26/2009 11:21 AM (GMT -7)   
I hope Humira takes allot less time to work for me, as I am to the point I can not handle the pain anymore. I'm so happy to hear your getting better with Humira. The entocot they took me off after a few months on Remicade. I think my GI moved to fast taking me off allot of my meds. I'm so happy for you,that your seeing some sort of light. Much luck to you! xoxoxo
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 6/26/2009 11:26 AM (GMT -7)   
RA&CD- This is only my experience with it....some people feel better right away with humira...unfortunately, I never respond that quickly to meds...I hope it helps you and you find the relief you are looking for....
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 1200mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex and 1000mg of cipro
Past meds: bactrum (side effect: rash), pentasa (tried twice in a 4 week period, severe nausea, vomiting and D), levquin (ineffective), flagyl (works, hate the side effects), enemas and suppositories (ineffective), imuran- tried 2/09, landed in the ER with severe back pain and raised liver funtions....
 


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 6/26/2009 11:27 AM (GMT -7)   
Yes, I went through that. I was on Remicade and had mild help with it but had a reaction to the antibodies and had to go off of it. I went on Humira and it was a miracle to me for 3 years. I led a nearly symptom free life and it was wonderful eating anything I wanted, almost no pain, no bleeding and no worrying about having to be near a bathroom all the time. I hope it works well for you. It is easy to do - so much easier than Remicade. I hope it works for you.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/26/2009 11:38 AM (GMT -7)   
Hi potatoqwn!
are you still currently taking Humira? or it stop working after 3 years? I hope I read wrong and your on it for 3 years and still working. I hope it does the same for me as it did for you. Thanks for the insight, makes me feel a little better, having hope there is actually something out there that may actually help! Thanks again xoxo
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/26/2009 11:39 AM (GMT -7)   
I've been on Humera for almost 2-yrs now. It's just now loosing it's "oomph". My GI doc keeps telling me she's going to up the dosing from every other week to every week. Been on Prednisone since April and have been on Imuran for several years. Have also been off and on the Entocort several times over the past 2-years. I'm afraid that one day I'll have been on everything and nothing will work anymore. At any rate, if I remember correctly, the Humera took a good 6-months before I started noticing that it was helping. I wish you all good luck with the Humera. I haven't done the Remicade yet. Sounds like I probably shouldn't waste the time or money huh?
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, Levsin, Welchol 625mg, Prednisone 10mg(started weaning off, now going back up in dosing).Canesa suppositories, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Flagyl, Cipro & Entocort
Misc:  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/26/2009 7:18 PM (GMT -7)   
Does anyone have advice on a type of pain killer that works for RA but doesn't make you feel like your 'high' or dizzy or feel sick? I want something I can take in the mean time of waiting for Humira but something I can take and still be able to to things. I have tired a few, all of which make me dizzy, sit on the couch for hours throwing up. (of course in my throw up bucket,I'm sure some of you have one if you have crohn's in the stomach, lol ;) I have my sister in-law stagette party, I know I am unable to drink but I would like to be able to move to even get there! I hope someone can give me advice
xoxo
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 6/26/2009 7:28 PM (GMT -7)   
Hi RA&CD well I would love to tell you that Humira is still working for me, but it has just recently lost effectiveness. I am sad about that. I threw a whole pity party for a few days, but I am moving on. I would not trade in those wonderful 3 years for anything though. It was incredible to have that relief because before that I was in a constant 15 year unrelenting flare. It was miserable and Humira was the only thing that worked for me long term. I know we are all different though. I really hope it works well for you especially since you are dealing with RA too! Geez, why do some of us have to suffer so?

I am now on to try Cimzia........

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/26/2009 8:15 PM (GMT -7)   
Hi potatoqwn
I am so so sorry to hear Humira stop working for you, I know the feeling for me with the Remicade.I'm glad to hear you had atleast 3 years of some sort of relief.It's just so horrible when you find something that works then just doesn't one day. I hope Cimzia works for you and that this is the last and final med for you. I hope humira works in a day for me, I am not sure how much longer I can handle the pain of the RA and CD. But I know there are people out there suffering as much or more then I. Thanks for your store, help allot! :)
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 6/27/2009 5:28 AM (GMT -7)   
RA&CD-my rheumy gave me ultram for pain...haven't tried it yet but it's not supposed to make u feel drugged
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009....I also have Graves disease/Hypothyroidism and psoriasis
Current meds: 1200mg xifaxin, 3mg entocort, Humira (started 3/23/09), 150mcg synthroid, 20mg aciphex
Past meds: bactrum (side effect: rash), pentasa (tried twice in a 4 week period, severe nausea, vomiting and D), levaquin (ineffective), flagyl (works, hate the side effects), enemas and suppositories (ineffective), imuran- tried 2/09, landed in the ER with severe back pain and raised liver funtions....
 


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/27/2009 9:24 AM (GMT -7)   
goldy3
Thanks for the advice, I ask the doc this morning, but he decided to try me on something else. I can't read his writing, but I'll let everyone know once i've taken one and how it works. He also suggest for the RA to take with Remicade.Methotrexate has anyone taken this? I've been reading up on this and it seems hard core, and side effects like crazy, it's actually a med they would give to cancer patience. And advice?!
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 6/28/2009 2:26 PM (GMT -7)   
So I've ask my doc to give me something that wont make me feel sick. It turns out he gave me Tramacet. I was reading threw some threads on here, and supposly  people feel sick on this. I hope it works out for me, if not I'll go back to the doc and demand ultrame. Thanks for the advice again!
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira

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