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


 
02-20-2012, 08:23 PM   #1
Miss Underestimated
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Who's been on Humira the longest?

I was reading some about it, and there are no long-term studies for Humira. I guess they must use the info they get from doctors to measure the effectiveness, and keep track of side effects.

I got to thinking maybe there are some long-term users on here. Care to share?
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*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
02-28-2012, 12:29 AM   #2
mhiler
 
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My husband has been on it for 7 years. The injections have become more and more painful over the years to the point that he explains the pain as a severe burning like his leg is on fire. He dreads the injections but they have kept him well.
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02-28-2012, 01:07 AM   #3
Miss Underestimated
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Wow! Thanks, that's the kind of info I was looking for. Sorry it hurts him so much.
02-28-2012, 10:24 PM   #4
Manzyb
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I was on it for 4 years. For 2 years I took one shot every other week, then after a very nasty flare was upped to one 40mg shot once a week, and then about a year after that ended up with a flare that led to my recent surgery.

When it worked, it worked awesome! It did start to hurt pretty bad though.

anyway.... i wasn't on it the longest... but i was on it for a while.
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02-28-2012, 11:03 PM   #5
Miss Underestimated
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Thanks!
02-28-2012, 11:13 PM   #6
uhmayzing
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I'm jealous....still trying to get on humira...
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03-01-2012, 06:46 AM   #7
Goose
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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.
03-01-2012, 09:09 AM   #8
Sybil Vane
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I just started it and noticed that the first 4 shots burned a little, but now my shots feel like a wasp sting. It takes everything I have not to jerk my hand away. I also get a lump where I gave myself a shot but the literature says that this is okay. I tried icing the site and it still feels like a wasp's sting. It does go away after 15 seconds, though, so I'm not going to complain if it helps my disease. I'm still in the waiting stage on that front.
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03-01-2012, 11:25 AM   #9
IAmTheWalrus
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Hopefully it works long term for me also! Although my IBD nurse said that if it ever fails, that includes if they try me on a once a week shot, I'm every other week as of now, that I can still try Remicade and Cimzia. She also said that there are quiet a few more biologics in the works and should be on the market in a few years which could be potentially more effective.
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03-01-2012, 01:08 PM   #10
Miss Underestimated
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Thanks for all the info!
03-01-2012, 03:57 PM   #11
outlier
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i though my nearly 2 years has been too long. 7 years!!!
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03-01-2012, 04:27 PM   #12
mhiler
 
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i though my nearly 2 years has been too long. 7 years!!!
Yeah - my husband got on it literally within weeks of its usage being approved for Crohn's. Prior to that, he had gone through every other med available and had no options left. He was getting by with Pred and surgeries. Humira was a lifesaver - literally - he was about 1-2 surgeries away from being put on TPN. He has no colon and about 7 feet of small bowel left and we pray that he can continue to stay surgery free!
03-02-2012, 01:49 AM   #13
ksiwek81
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I was on Humira for 3 years before I built up a tolerance against it. I was never able to administer the injection myself because it is some super thick stuff and down right painful. I hope it works better for you than it did me. Good Luck
03-02-2012, 04:23 PM   #14
Echoes
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Hi, I have been on Humira for approximately four years. Originally taking the injections fortnightly but now every week as been having some problems.

I have not had any problems with the injection site, but do find the injections less painfull if you take them out of the fridge twenty minutes before administering
03-03-2012, 11:30 AM   #15
tx2vullo
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Hello everyone, my name is Teresa and I am new to this forum. Actually, I've never even been in a forum ever. . . so you just type and wait for others to respond I guess? I've had Crohn's Disease for 14 years now and am just now beginning to really understand and own the disease. I was diagnosed young, 11 years old, and never quite took it seriously. Anyway, just got out of the hospital yesterday after a week-long stay due to a small-bowel obstruction, second time in a month! This time I've learned I need to watch what I eat! So they put me on Prednisone, as they have many, many times before, and as we all I'm sure know, is only a temporary solution. So sorry, that is just my back story, but what I'm also wondering about is Humira. My doctor is going to put me on that, Remicade, or asacol. From reading all the above replies I must say Humira sounds quite frighhtening! Is it worth the pain, rashes etc.? I've also read about many other just as scary side effects. I'm in desperate need of a new med, as I do not want another flare-up, obstruction, surgery or otherwise. I haven't been on any steady meds for Crohn's since I was a child, so I'm pretty much up to try anything, even Humira if need be. Any other good meds out there that have worked for ya'll? Thanks in advance, and for your patience in reading all this! Again, I'm new, I suppose you don't need my whole story haha
03-03-2012, 02:54 PM   #16
Echoes
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Hi Teresa, sorry to here of your problems. I too am just out of hospital after having 2 small bowel obstructions in the last 3 weeks. Like you I am on steroids again, thats on top of the weekly Humira. For me Humira has been worth it, the injections are not too difficult and until recently was working well for me.
If its offered to you I would give Humira a go , it's widely used now and if it works most Dr's seem happy to leave patients on it long term.
Good luck and best wishes!
03-03-2012, 04:30 PM   #17
Miss Underestimated
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Hi Teresa, Sorry you've had to deal with this terrible disease. I think it's important to have a doctor you like and trust, and then if he/she suggests Humira, I would take it.

Bowel obstructions are scary too. And you may not feel it now, but prednisone does all kinds of damage that you will have to live with when you're older.
03-04-2012, 01:24 PM   #18
tx2vullo
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Miss Underestimated - You said Prednisone has severe long-term side-effects? I've been on it several times, never more than a few months though. I hate needing to always rely on something to feel normal, but I guess that's the way this disease rears it's ugly head. What happens if I'm on this for awhile, like years from now?
03-04-2012, 03:29 PM   #19
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I'm a relative newcomer to Humira, only 15mths for me. I have noticed that the jabs do seem to be more painful so I've gone from pen to syringe(1st one on this coming friday) I think the majority of stinging is due to the cold temp of the drug. The Methotrexate I was on was by injection (syringe) & tbh the injections were pain free & easy. But of course the Methotrexate didn't have to be refrigerated. Just a shame I couldn't get on with the drug.
I also appear to have hives @ times & get very itchy.
Rgds
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03-04-2012, 09:03 PM   #20
Miss Underestimated
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Miss Underestimated - You said Prednisone has severe long-term side-effects? I've been on it several times, never more than a few months though. I hate needing to always rely on something to feel normal, but I guess that's the way this disease rears it's ugly head. What happens if I'm on this for awhile, like years from now?
The worst long-term problem is probably osteoporosis. When you take it, it leaches the calcium out of your bones. Then, when you are older, your bones are thin and brittle, and can break easily. I don't know the statistics, but a high percentage of elderly people die from complications after falling and breaking a hip bone.

It's kind of a rock and a hard place, if we need the prednisone to control the Crohns. But if there is another possibility, when you weigh your options you should be aware of the long term consequences of prednisone as well as the side effects of the biologic drugs like Humira and Remecade.

Talk to your doctor about the long term damage from the prednisone.

Edited to add - I'm beginning my 3rd month on Humira. No reactions so far. The pen stings a little but I'm tougher than I look.
03-05-2012, 08:43 PM   #21
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I was on Humira for 3 years before I built up a tolerance against it. I was never able to administer the injection myself because it is some super thick stuff and down right painful. I hope it works better for you than it did me. Good Luck

Hi Ksiwek81,

I've just built up antibodies against it (I think). I'm in the process of finding another treatment. What did you go on after the Humira?

Thanks!
Sam
03-20-2012, 10:30 PM   #22
Max's Mom
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My son(10 years old) has been on Humira for 2 weeks. He was doing great until yesterday and today he seems to starting another flare-up. Could it be that Humira stopped working already? Before this he was on Remicade for 1.5 years before it failed.
03-22-2012, 06:38 PM   #23
Miss Underestimated
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My son(10 years old) has been on Humira for 2 weeks. He was doing great until yesterday and today he seems to starting another flare-up. Could it be that Humira stopped working already? Before this he was on Remicade for 1.5 years before it failed.

I think it takes longer than this to even take effect, really. Give it more time.
03-23-2012, 09:13 AM   #24
RaymondH
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I think it takes longer than this to even take effect, really. Give it more time.
You are right Miss, my doctor is trying to get me on Humira and has said that it can take up to 3 months before having full (or any) effect.

I would say don't give up on it just yet, Max's Mom!
04-05-2012, 01:35 PM   #25
Max's Mom
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We just found out that Max has c-diff (4th time) so it's not a flare-up.Or maybe the c-diff never went away.Nobody seems to be able to figure it out.He has been on Flagyl before and the Vancomyacin,and now we starting Flagyl again,they said that he is to young for the new stuff out there?
04-05-2012, 05:52 PM   #26
ksiwek81
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@ Samantha- I'm on methotrexate and Cimeza now. I just took my second dose of the metho yesterday. I'm waiting for my pcp to send my labs over to my GI, so I can start Cimeza . I did took the starter pack a few months ago, but had to discontinue bc of abscesses . I can say that Cimeza is less painful to administer and the loading dosage is 2 injections, versus the 4 with Humira. Another perk, is the maintence injection is once a month.
09-19-2014, 09:17 PM   #27
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I don't know if it's "OK" to dig up this old thread, but perhaps it's better than starting a new one? I've been on Humira for 10 years now, 40mg a week. I was in 2 of the clinical trials up here and Abbot is still following me as part of a long term study. No side effects that I've noticed yet. I'm wondering if anyone here has been on Humira this long, or longer? Have you noticed any side effects?

I'm happy there are no side effects so far but I worry about what being on these drugs for decades could lead do. I guess uncontrolled Crohn's for decades wouldn't be doing my body any favours either...
09-20-2014, 03:11 AM   #28
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I don't know if it's "OK" to dig up this old thread, but perhaps it's better than starting a new one? I've been on Humira for 10 years now, 40mg a week. I was in 2 of the clinical trials up here and Abbot is still following me as part of a long term study. No side effects that I've noticed yet. I'm wondering if anyone here has been on Humira this long, or longer? Have you noticed any side effects?

I'm happy there are no side effects so far but I worry about what being on these drugs for decades could lead do. I guess uncontrolled Crohn's for decades wouldn't be doing my body any favours either...
Yeah ... usually its bad form to dig up a thread that is this old but;

Thanks for posting. One of the big questions is how long will any of the biologics be effective for a person. Many people get a few good years out of each one (or less) before they have to move on to the next one. It's hard to judge by the posts on this forum, however, as those who seek out online support groups tend to self-select as a minority of the overall patient population who are not doing well. There may be more than the population average of patients on this forum who are unable to tolerate the biologics (which is why they find the forum) ... for those of us who read the posts here regularly it is hard to know what the current trend is.

I'm glad that Abbott is following you to keep an eye on the long-term efficacy of Humira. It will be interesting to read when that study is released. I'm sure a similar study is on-going for Remicade patients; that was released in 2002 so the clinical trials must have started over 15 years ago. I wonder how many from those early trials are still maintaining (especially considering Remicade that the use and administration of Remicade has changed so drastically since its release).
09-20-2014, 05:13 AM   #29
Grant
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Nearly 4 years for me. I actually think its done a very good job for me, I started in Dec 10. My surgery in May 12 could've been prevented if delays in organizing a Colonoscopy in Autumn 10 hadn't happened. Because basically my Crohns got pretty bad after a surgery in Aug10.
If @ the onset of the flare up they had scoped me & got me on Humira within days I think I'd be on 3 major surgeries instead of 4.
que sera I guess.
Keep well everyone
Grant
09-24-2014, 01:01 AM   #30
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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.
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