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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Who's been on Humira the longest?


 
09-24-2014, 01:49 AM   #31
Scifimom
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Join Date: Aug 2010
Location: THESSALONIKI, Greece

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Four years and counting, just one shot every two weeks, I am flare free surgery free and have just some minor side effects (headaches and some hair loss) No difference in the pain level of the shot, I inject in my belly and use syringes (I live in Greece and we don't have pens available here). The only real "problem" I have is chronic diarrhea and intolerance in fruits and veggies, but I can eat chocolate so.... I am ok.
09-25-2014, 01:19 AM   #32
northwesterner
 
Join Date: Mar 2013

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2 years humira.
Dont see many long term studies of Humira out there - but I also see that most people on Humira stop after 3 years because of an antibody buildup.
We see a lot of members post on this forum about having to stop Humira due to anti-body build up. However, many of these same members also had short term relief from Remicade, etc. I've always believed these forum participants self-select to post here because of their difficulties (do not tolerate anti-tnf, long term, for instance). We see fewer posts from those who are in remission and on long term anti-TNF treatment, mostly because they are in remission.

That's what makes the post from the member who's been on Humira and is being followed so interesting; when that study is release we should actually have a good idea on how long these medications can work.
09-25-2014, 11:03 AM   #33
n00b
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Join Date: Oct 2011
Location: Suffolk, United Kingdom

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Well said.

Remember that a very high percentage of people that visit, respond and create posts in forums do so because something is not right or they have an issue.

The lucky people who respond well and are living a normal life, symptom free DO NOT visit/post on forums.
....there are ALOT of people who have crohns or colitis that are fit, well and have responded well to treatment and/or life style changes that we dont know see on forums such as this...just wish I was one of them
12-07-2014, 03:21 PM   #34
IAmTheWalrus
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Damn. This thread just reminded me I'm on Humira the past 3 years & aza since September 09!!
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28 y/o male from Dublin, Ireland, Dx with Crohn's Colitis in January 09.

Current Meds: Remicade, Imuran.

Risk/Benefits of treating Crohn's. Link below

http://www.ccfa.org/assets/pdfs/risk...transcript.pdf
06-08-2015, 03:29 PM   #35
moomoo21
 
Join Date: Jun 2015
Location: Manchester, United Kingdom
Hi I've been taking humira for over 8 years for AS and Crohns. I had a few scares I've been tested for MS Lupus thought I had glaucoma from the humira. I'm still taking the drugs but its effect on my symptoms has been reduced I'm assuming I've built up a tolerance to it.I will keep taking it for now I hate putting drugs in my body but the pain just gets too much to be able to cope without them.:-(
06-08-2015, 04:01 PM   #36
DougUte
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Location: Kaysville, Utah

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We see a lot of members post on this forum about having to stop Humira due to anti-body build up. However, many of these same members also had short term relief from Remicade, etc. I've always believed these forum participants self-select to post here because of their difficulties (do not tolerate anti-tnf, long term, for instance). We see fewer posts from those who are in remission and on long term anti-TNF treatment, mostly because they are in remission.

That's what makes the post from the member who's been on Humira and is being followed so interesting; when that study is release we should actually have a good idea on how long these medications can work.
I don't post a lot because I am in remission (at least what my GI calls remission). I have been on Humira for 4 years this month. Doing well. I do have some symptoms, mainly the "D".
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
05-07-2017, 07:25 AM   #37
domino22
 
Join Date: May 2017
Location: NORTHAMPTON, United Kingdom
hi everyone ive seen a few people asking what is the longest time somebody has been on humira injection , well for me its 13 years . was on the trial to start off with for i think 3 years and just carried on after that , still on it now . works great for me stopped alot of pain . i know it does not work for everybody . theres a new drug just came out more advanced than humira , will try and find out the name , only been out a month so really new . carl
05-07-2017, 08:15 AM   #38
TammyR
 
Join Date: May 2016
Location: Adelaide, South Australia, Australia
I've been taking Humira now for 3 yrs. Not having too much problem with the injection site (I inject in my thigh) and it has done well for me. Just recently I've developed an itchy rash and some hives straight after I dyed my hair. It settled but have noticed since that my lower legs can feel so itchy, and my hands/arms too. Sometimes I feel like my blood is making me itch!! I have a dry rash over my torso which comes and goes. I've been prescribed topical creams which soothe but wonder if the longer I am on it the more reactions I will develop. We'll see.
I know this is a very old post but I had the same reaction to Remicade which resulted in me trying Humira. So far so good but I do wonder if I'll have the same reaction that you've mentioned.
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Tammy
Diganosed - Crohns Feb 2016
MR Small Bowel Study Jan 2016
MRCP 6/16, 7/17 - no change (2 small cysts)
CT Abdomen and Pelvis 10/16 - Acute/Chronic flare distal small bowel with at least two areas of partial obstruction identified.
Started Humira 12/4/17. Previously on Remicade (4 rounds - caused rash), Pentasa, Aza (caused pancreatitis).
05-07-2017, 10:08 AM   #39
domino22
 
Join Date: May 2017
Location: NORTHAMPTON, United Kingdom
hi tammy r . sounds you have been through the wars . humira is such a strange drug with some strange side effects , as we know humira knocks down your immune system and in doing that helps stop your body attacking itself . your immune system is very complicated and can do strange things . i know itching is a side effect but its different for everybody . scientists are getting very advanced in these drugs now and new ones on way through . perhaps ask gp if he knows of any new ones or you can go on a trial like i did , that dose not mean you will end up with 6 heads and 4 legs because its a trial . they look after you very well and you are getting the drug before anyone . as you also know with humira certain foods you canot eat and i suppose that can easily include hair dyes on your skin , remember you body can act very strange when your lowering your immune system as its on of the most powerful things in your body thats why it can cause so much damage . you could try different hair dye brands to see if makes a difference . do a skin test day or so before . do they do natural organic hair dyes now ? remember tammy if you feel your not happy with anything tell the dr , theres alternatives . at the end of the day its your body . oh yes avoid stress
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