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I haven't had problems with side effects & I've been on it 3 weeks now. I have drank a few times too without problems except I think it causes some inflammation or dehydration that leads to mild constipation.
I have been wondering about thigh and back soreness/stiffness. Maybe I've just been overdoing it while I'm so out of shape!
 
Are we not supposed to drink on humira? I don't even remember reading/being told that. I know I have to go easier on it anyway, tho, learned when I was on Remicade that different types of alcohol may give me more inflammation.
 
Are we not supposed to drink on humira? I don't even remember reading/being told that. I know I have to go easier on it anyway, tho, learned when I was on Remicade that different types of alcohol may give me more inflammation.
I remember seeing something about that in the literature but I still drink like a fish on occasion. I just try not to do it in injection day
 
Tomorrow is my first dose after the loading doses. I feel awful. Everything hurts. I can't wait to stab myself again :p
 
Hi all,

I was on humira from Feb 2009 until May 2013 when I asked my consultant if I could come off humira to see if my body could cope without it (worst mistake ever), my consultant simply said "yes try it." In October 2013 I had a big flare until Jan 14 when it was more under control. I have never felt like it has been put into remission completely as I was sensitive to so much food that I could eat prior to the flare - even melon. About 5 weeks ago it started flaring again but not as bad as the previous one (mostly D after eating, going around 5-6 times a day, some cramping, urgency and stomach grumbles and bubbles a lot). The consultant has put me to x1 weekly humira instead of fortnightly. I have been injecting weekly for about 4-5 weeks now and I know that it can take up to 3 months to take proper effect. The specialist nurse has said I should persevere as I'd then be put on steroids which they know I am reluctant to do.

I'm just wondering why I'd be put on steroids as my view is if the treatment is no longer working then steroids may just settle it for a short time and then it will come back when I taper and the humira isn't working? So what's the point? Why don't they look at another biologic or Methotrexate? (Remicade has failed 2/3 times with me over the years).
I will take entocort if I have to but not pred). Do you think I need to just give it more time to work before I panic and ask for steroids or resign myself to the fact the humira isn't working?

I'm no longer under the consultant's care who said I could come off humira due to poor management from them as a team. I changed trusts and consultant in November last yr.
I'm currently not in work due to the urgency I get and lack of energy and stomach discomfort like bloating etc. I am frontline nhs and my job is far too active and stressful to cope with this flare too :(

Thank you for any advice/opinion you may have.
 
I was considering coming off of Humira but after reading your story I'm having second thoughts. Were your symptoms immediate after you stop taking the medicine?
 
^^^^ yeah that
DS has been on humira for over a year
No drug issues .
The thing with biologics is the docs /drug companies keep telling you about the dreaded possible side effects over and over.

No one does this for Tylenol and it's given to infants but can cause liver damage and deadly side effects .

Nothing is risk free .

We focus on the benefits instead
 
I am immensely grateful to biologics. I know what the potential side effects are but what choice do we have eh? Don't take it = very very unwell, take it = most likely well and possibly have side effects.
In the years I have been on it the only side effects I could link is raynaurds (but then again this is common in young women so may not be humira to blame) and more susceptible to infections like viral infections and a bit of dermatitis on my left toes - I can live with all those. If it wasn't for humira I'd be in a much worse place, I am so happy how well it has worked for me and free from our wonderful NHS.

Starbynight: my symptoms started 5 months after stopping it. I thought within those first 5mths 'wow this is great, I don't even need humira or other nasties' then boom along comes a monster flare to knock me down. My personal advice to you is don't come off the treatment if it works for you. The consultant has always said my moderate/acute crohns needs nipping in the bud and humira did that and kept me well. I wish so much I never came off it as I know I wouldn't be like this now, I have probably built antibodies to it now - joy. Stay on it and be happy you're well :)
 
Sometimes meds work and you don't see it or know they are working. My daughter almost came off Humira as we aren't seeing any difference. Her symptoms weren't really changing. Its behind the scenes that we can see the results with better scopes. If I didn't see it I wouldn't believe it. I was ready to give up after 7 months but there aren't any alternatives. Adding a combo drug can help a lot and I suggest it. We just switched from methotrexate to Imuran. For the first time in 2 years my girl went to the bathroom only 6 times yesterday and today will probably be 8. It is a wonderful feeling that for the first time we see some light in her treatment. Don't give up to find what works.
 
Thanks for your input. The reason my GI put me on Humira was due to to a possible recurrence of symptoms. This was last year and since then I only had one mild flair up. Sound like I should wait before acting.
 
This Thursday will be my second dose of Humira... I have noticed that I have gotten more headaches in the last couple weeks than before...and that I seem to be extra tired (which is saying a lot, Im already tired) Has anyone else had trouble with this? Is it maybe because I just did the loading dose a couple weeks ago and my body is just getting used to it? Or should I just suffer through the headaches for a while? Its making it hard for me to be at work in the afternoons especially...
 
I did notice headaches and tiredness at first, but it went away, I guess once my body got used to the medication.
 
I had horrible migraines for a day or so after my Humira injections for the first few months, then that side effect went away. I was exhausted after my loading dose, but the second dose and the subsequent doses have not made me any more tired than I already am. Give it some time; it should resolve. :)
 
This Thursday will be my second dose of Humira... I have noticed that I have gotten more headaches in the last couple weeks than before...and that I seem to be extra tired (which is saying a lot, Im already tired) Has anyone else had trouble with this? Is it maybe because I just did the loading dose a couple weeks ago and my body is just getting used to it? Or should I just suffer through the headaches for a while? Its making it hard for me to be at work in the afternoons especially...

Hi MrsDay!Looks like we are on the same track! last week I had my first 4 doses and I will take 2 on June 26 then 1 every other week. I am tired also, circles under my eyes and sighing alot! -not too much energy either. I haven't had any headaches though... I DO think my pain is a little better though and I am down to 5mg of prednisone and usually I am hurting bad by now. So I am hopeful!
I know they say it can take 4 weeks and who's to say what is going on with this crazy disease? I hope you feel better soon!! :)Meg
 
I'm also on my second dose of Humira next week and so far so good. No headaches and have dropped down to 5mg of pred for 2 weeks before going off. Still have mouth ulcer so hopefully the Humira will fix that soon. Glad I haven't had any side effects like I had with aza and ap6. Does anyone find that the Humira helps other manifestations of Crohn's:.
 
After 35 years of Crohns and old meds, my doc has put me on Humira. I'm on social security and a prescription plan and scared to death about the costs. Any help there? My rep is coming to see me next week.
 
Pollie there is help directly through Humira. In Canada it is Progress that helps us with the 20% our insurance doesn't cover. I recall this in another thread. Search the forum (& I will search for the thread too). Hopefully someone in the states chimes in soon if we don't find the thread.

Good luck with Humira!
 
Humira was covered by my Medicare "silver scripts."Have to get Pre-approval though. Download application from Medicare site fill out what you can then take to doctor to complete. ( Silver Scripts is a part of my Empire Plan NY State Medical Insurance for retirees)
Good luck!
 
I will check that out. Thank you. I'm also really concerned at my age about the side effects. I've had 2 surgeries (docs advise no more than 4) but I'd almost rather face another surgery than the side effects (cancer, etc) of Humira.
 
I am going in Humira next month and I'm wondering if my ileum needs to be resected first. Ive had two blockages this year. Also, has Humira helped with artritis in spine?
 
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Ive been on humira for 4 months. Started helping me after 2 months or so. Recently been having a few issues with BM. But been a helper thus far. Have had half desending colon removed and had 2 feet of intestine split. Tried mosr every treatment and humira best so far. Waiting on SCR....
 
Question for you all i'm kind of freaking out. I have been on humira for about 6 months and now have sore muscles in the legs, the left side of my neck and shoulder. Numbness in my hand if I carry anything. The other day was a sore throat and today I lost the vision for 5 min or so in my left eye. Has anyone ever had any side effects like this? Should I be heading to the hospital?
 
I would definitely mention it to your doctor if you haven't already, but I don't think it's at the point where you need to go to the hospital. You should let your GI know right away, though.

Are you on any other medication?
 
Please help, I have put so much weight on since starting humira last summer it is getting unreasonable now I need to do something. I have a as healthy as can be lifestyle now thanks to humira but cannot stop the steady weight increase
 
I caught a GI bug from my son. So miserable. Do I take Tylenol for the fever? Just try to stay hydrated?
Trying to see it as a reset button because the last few weeks have been awful. Need to stock up on probiotics and get this under control.
 
When they say don't inject yourself if the Humira window is cloudy, what exactly does that mean? When I take my Humira pens out of the refrigerator, the window isn't exactly see through. It looks like a cool glass of water. Not sure if it's condensation or not. I just want to make sure I'm not injecting myself with something I'm not supposed to be. I just took the injection about 15 minutes ago.
 
Does anyone have to sike yourself up to take the injection? I get so excited the day before because I know I am about to feel better and then day of I just stare at it all day trying to build the courage to do it
 
Absolutely! My husband helps me get ready for it, like "you can do it!" And then promises me candy afterward ;) it's nice to have a support system with you when giving yourself the shots
 
Does anyone have to sike yourself up to take the injection? I get so excited the day before because I know I am about to feel better and then day of I just stare at it all day trying to build the courage to do it

Yes, it's interesting how psychologically challenging it can be to take the injection. It's been over a year and I still hesitate a second before I hit the button. Though, all it takes is the memory of the unbearable pain and nausea of active Crohn's to get me past the hesitation.
 
I was diagnosed 27 years AGO and have been terrified to try the humira or remicade because of the side effects listed.....do any of you on Humira feel any side effects...I've been reading your posts and see that the first injections and injection sites are the worst of it...are there any negative side effects you feel at all? I am so sensitive and am in such horrible pain the past year or more I just want to know that it will really be worth it....I am in a new area with new drs and my last GI wanted to put me on remicade but i refused...because of the side effects list....currently on prednisone....tried mercaptopurine but it made me so nauseated
 
I have had no side effects from humira, been on it for over 3 years and it has given me great remission.
 
Can anyone help with this please, I'm on humira it has relieved many oh my severe crohns problems for which I am so grateful, but I havealmost doubled in size in 9 months and I get dreadful headaches and nausea, I take cyclizine for the nausea but it sends me to sleep which I don't always want. Am I being too fussy ? Or does anyone know of an anti sickness which does not make you drowsy :confused2::confused2::confused2:
 
I get a little nervous but last time I did it in the pharmacy parking lot with my kids watching because I'd had such a miserable week.
 
Very sorry to hear that Muddajo. How long have you been taking the Humira? I use to get really tired and have headaches for the first three months of starting, it subsided. I have not had nausea so I do not have any suggestions for that. Hopefully this is just a beginning effect for you that will end up easing as time and your system adjust.
 
😄thankyou for your message, sometimes looking back to how I was before humira I think I'm being too fussy, what's a few niggles compared to the awful pain and symptoms I was going through for years,before humira nothing worked for me, except surgery and the last one didn't help at all !
Hope you are feeling healthy :)
Ps. I'm a newbie and still finding my way on this site :ybatty:
 
Will be starting Humira on Monday July7th, was supposed to be on the 30th of June but Dr refused to let me take it because I was getting my last Hep B booster and he was worried about medication interaction and my bodies reaction to both drugs. I haven't had much luck with drugs since I was diagnosed with Crohn's with the medications, Imuran caused pancreatitis and gall bladder inflammation and Remicade caused serum sickness so I am a little nervous about Humira and possible reaction. Although it sounds like it will help with the arthritis that I seem to have developed over the last few months. Anything specific I should watch for here? Thanks
 
I am stopping humira today. The GI is talking about putting me on Remicade however with the last 2 drugs Imuran and then Humira I have had side effects. So i'm a scared to put anything else in my body. This is kind of feeling a little like russian rulette. I go back to see him on the 10th so here is hoping that things work out.
 
I was diagnosed 27 years AGO and have been terrified to try the humira or remicade because of the side effects listed.....do any of you on Humira feel any side effects...I've been reading your posts and see that the first injections and injection sites are the worst of it...are there any negative side effects you feel at all? I am so sensitive and am in such horrible pain the past year or more I just want to know that it will really be worth it....I am in a new area with new drs and my last GI wanted to put me on remicade but i refused...because of the side effects list....currently on prednisone....tried mercaptopurine but it made me so nauseated

Lori, if I had to choose any day between the side effects from prednisone and the side effects from Humira, it would be humira every time!!! Prednisone is so bad for your body, humira can't top that one.... Most people don't get many side effects on humira. So go for it and hope that your body will respond to it!
 
We are continuously marketed to and I just read this blog post about how AbbVie, the makers of Humira, uses psychological techniques to influence us. Namely "Motivational Interviewing" in this case. It's something to be aware of. It's not anti-Humira or anti-AbbVie, it's a more of an FYI about the role of advertising. The blog post is at DavidHealy.org and called Please Don't Empower Me Anymore.
 
For those of you just starting humira
It can work its not all horror stories
DS is only 10 and has been on it for over a year.
He failed all other drugs but remicade which he had to allergic reactions too plus skin ousted with.

Humira burns like crazy so be prepared
It can cause fatigue the day after in the beginning - we give DS his at night so he can sleep through most of it .
No live vaccines while on it and other vaccines taken may not be as effective .
Any fever or infection check with your Gi prior to giving the shot .
Any ER vists make sure they know about humira,

We were told DS is more prone to opportunistic infections but not normal kid germs ( cough cold etc..) he has survived 3rd and 4th grade - he was healthier. Cold wise than he has ever been .

Good luck
 
For those of you just starting humira
It can work its not all horror stories
DS is only 10 and has been on it for over a year.
He failed all other drugs but remicade which he had to allergic reactions too plus skin ousted with.

Humira burns like crazy so be prepared
It can cause fatigue the day after in the beginning - we give DS his at night so he can sleep through most of it .
No live vaccines while on it and other vaccines taken may not be as effective .
Any fever or infection check with your Gi prior to giving the shot .
Any ER vists make sure they know about humira,

We were told DS is more prone to opportunistic infections but not normal kid germs ( cough cold etc..) he has survived 3rd and 4th grade - he was healthier. Cold wise than he has ever been .

Good luck

Hey penguin, it seems your son developed arthritis while on treatment. I ask bc I often think I developed it due to being in the wrong treatment. How did it happen to your son?
 
My daughter has now been on Humira for 8 months. For most of it I didn't think it was working. Changing the combo med is making all the difference. She used to be on methotrexate + Humira, now imuran + Humira (started in June). On Mtx combo she was still going 14+ times a day. On the imuran combo she is down to 6-8. We are on our first vacation since diagnosis and 8 of us are in a cottage with one bathroom. So far no issues! That to us it a miracle.
 
Jajabinks
DS had joint pain since July 2012- he was dx with myalgia/arthralgia and started seeing a Rheumo -then .
He was on Mtx by itself then switched to remicade for 8 months only to have two allergic reactions and switched to humira by itself until the official arthritis dx.
We had to wait until his crohn's had been under control a while to determine if he had arthritis or if it was just an EIM of crohn's.
His arthritis is independent of Crohn's disease activity and in both his hands .
A large portion of kids with crohn's develop arthritis regardless of med - no one knows why..except possible HLA-b27 gene seems to be common in these kids with both

Also a small portion of JIA kids develop Ibd later again they tend to have the HLA-b27
 
It looks like I am going to be starting Humira soon. My GI's office is trying to see if they can get it covered for me. I had labs today to check for hep B and something else. I don't typically do well with needles, so I'm pretty nervous about injections. I work for my primary doctor, so I may see if they will give me my shots. :)
 
The first dose is four pens so you have to do two belly and two legs. The leg shots hurt SO bad. I've only done belly since then. It burns but only for a few seconds. If you're hesitant, def have help for the first dose!
 
My loading dose of 4 shots were all in the belly. I switched to the thighs for a while, after that started to hurt, folks here suggested switching back to the belly and moving a little to the sides, finding the flabbiest spots I could. That has made it a lot better. I let the pen warm up 15 minutes, I wait a little bit after wiping with the alcohol prep pad so the alcohol evaporates and doesn't get carried through the skin on the needle to reduce the burning. If I'm already sore, feeling sensitive, or worried about pain, I'll ice the spot first, too, and then I hardly feel a thing. I've only iced a couple of times, usually I just put up with the brief sting.

For my first time, I decided to do the very first one myself. My thinking was, if it really hurt, if it was bad, if I had already done it myself, I'd know I could do it, and then could do the others, but if I had someone give me the first one or two and it hurt a lot, it'd be much harder for me to give myself the rest. Yes, it hurt, but it was ok.

As an adult, I've not had much trouble with needles, although I certainly don't like them. However, I remember as a kid learning about diabetics giving themselves insulin injections and thinking about how I could never do something like that.
 
I usually inject in the belly and I've noticed that when I pinch up the fat in one movement and inject, there is no blood. However, when I pinch up the fat, then release, and pinch it up again, then inject, there's usually a little bit of blood afterward. Not that it's illogical - I'm circulating the blood when I repeatedly pinch my flesh. Has anyone else experienced this?
 
I had my dose yesterday, today I noticed a very large lump, smaller than a baseball bigger than a ping pong pall, at the injection site. Its hard. thoughts?
 
The last two times I've done my Humira injections, I had localized swelling (I always do mine in the thigh), but I'm pretty sure that it was just the medicine pooling. Eventually it dissipated.
 
Sub-q means it goes under the skin, not in the muscle, so there is no need to "go deep enough". thats why you pinch your skin, to pull it away from the muscle
 
Anyone had dizziness and nausea right after taking the shot? I have been injecting Humira since april with no problems. Today, right after I pulled the needle out I felt really bad, light headed, dizzy and nauseated. It went away in 15 minutes or so but I don´t want to feel like that on every shot from now on...
 
It was not like allergic reaction. I had to stop Remicade due to anaphylaxis and exhaustion and increased heart rate. This was just nausea and dizziness, I had to lie down because I felt I was going to faint.
 
Seems I finally got approved for the assistance program, so I can actually get this medication. Now begins injection anxiety...
 
Patch, once you get the loading dose done, you'll be a pro. It's four injections so it's not a big deal after that unless you make it a big deal!
 
So....I had my first Humira treatment 12 days ago and things went along pretty well for 10 days and then I started to swell not a little swelling but a lot - feet, ankles, legs, knees, fingers, wrists, arms, pretty much everywhere. Family doctor says that I can't take the Humira again - but to be safe to see my Gastro because he prescribed it.

This is not good! Can't take Imuran, can't take remicade, now humira - next?

Any thoughts?
 
Hi all im new to this site this is my first post. Im here on this website cuz my bf has crohns hes 31 and was diagnosed at 25 yrs old. The recent 1 and a half years now he is having erythema nodusum onhis legs now its like hes having it 6 times in a span of 1 and a half years. Hes taking prednisone 37mg a day and he said it is still not stoping his e.n. and now doctor has filed an application from govt to give him humira. Hes just waitinf now for the apprival but im reading stuff from google the side effects are so horrible I am scared for my bf I wish he will not get those side effects.

I am thinking of telling him not to take humira and find other options available but it seems he has tried every thing and nothing seems to work I feel very sad I cant do anytime to help him :(
 
i was nervous too. ive only taken the first loading dose, (4 shots) but i have had no side effects. unless dry skin is one
 
hat is nice fissure I can't help to worry I found this website and it scares me but I am not sure if this are just rare case scenarios. Sorry if I looked at this website I just feel paranoid for my boyfriend I want to help him to feel better I have seen him suffer just with that erythema nodusum I visit him in and out of hospital and see doctors give him different drugs which doesnt work for him thats why they gave him high dose of prednisone which helps a bit for his e.n. when nothing seemed 2 work for his e.n. I checked on google what medicine can work and found out sski drops can help so I told him to take that and it seemed to control and minimise the redness and swelling of his e.n. and the funny thing is after 3 months the doctor told him to take that sski for his e.n. isnt that stupid I am not a doctor but I took upon my hands to check on the internet what can help his e.n. and that doctor only tell that sski too late.

Anyweis this was the website that is scaring me I wish incase my bf gets his humira he will not get side effects :(
 
So after a two month hiatus from Humira, due to needing my gallbladder removed, having liver issues, and being diagnosed with Autoimmune Hepatitis, I'm back on Humira. I was only on Humira for three months before I had to stop it, and was injecting every other week. This time around, I noticed minimal improvement, but that was about it. Switching it to weekly injections to see if it helps anyways, but my doc said that there is a chance with stopping and starting that there may be issues. I love the convenience of Humira, and don't want to switch, ugh.
 
Why oh why is this medication so expensive? I got a call from the specialty pharmacy yesterday, wanting to ship the starter kit. I asked the lady how much it would cost, and she said, $2,945. I literally said, "Are you kidding me?" I have to call back on Monday to enroll in the copay assistance program. Sheesh.
 
look up the "humira protection plan". i got accepted and pay almost nothing per shot.
ask your doctor about the humira advocate program, its free. there is also the crohns and colitis advocate program which is also free.
 
I've been taking humira for several years now. I started in the legs and cried like a little baby each time. I've even tried one in the buttocks! my place to take humira is on the right side of the stomach. I don't know why, but if I have it in the left side, it hurts like crazy. but I seem to tolerate the right side better. don't get me wrong, it still hurts but not as bad. and...I make my husband give them to me!

oh and the humira protection plan is wonderful. I didn't have insurance for a while cause of my pre-existing condition so I got it free. but now that the insurance covers me, CVS Caremark ships it to me for $5 a box.
 
Yesterday I gave my kid her Humira needle. The injection site bled and brused. I hate when that happens. I'm normally pretty good, but I know she jerked and I moved making a recipe for bad results. I really hate administering Humira...
 
Yesterday when I went to my GI, he enrolled me in the Humira ambassador program. Someone called me today. She was very informative and helpful. Even though I know how to do the shot, she is still coming out for my next dose to give me a few pointers and see how things are going. Talk to your GI about being enrolled. She also wanted to make sure that I was only paying $5 for it, and if I wasn't or if my insurance changes to where it increases, she said she would take care of it. Overall, Abbvie provides EXCELLENT patient support
 
exactly, afidz!!

Does anyone else have arthritis? i just got it in my toes this week, it really hurts. Does humira help like its supposed to?
 
Lately I've been developing a lot of anxiety when I have to inject myself... I use an auto-pen because I can't look at needles and prefer the speed of it, but lately the clicking sound is really upsetting me, even to think about. I've been having a lot of issues administering my injections because of it, and I don't know how I feel about asking my SO or a family member to help me.

Does anyone have any coping methods when they're injecting?
 
I can't imagine someone else doing the injection. I like having control. But I know what you mean about the clicking. I hear it in my head when I'm psyching myself up. I just try to take deep breaths and think about how much the medicine helps me. I usually get pretty jazzed on injection days. I'm not sure if the actual drug has that effect or if the adrenaline gets me going!
 
Regarding arthritis, within the last year I have experienced very painful arthritis. At 52, I never experienced arthritis. I ended up consulting a Rheumatologist and discovered my c reactive protein was high which is a sign that inflammation is present. He upped my dose of humira and it seemed to help. My arthritis seems to flair when my Crohns flairs. Another thing to work around😝
 
im 25 :( my doctor told me to look for a patterns, like if it gets worse a couple days before the next dose. He said if the humira doesnt help, they will add a medication to boost the strength of the humira. Other than that be careful about diet. Im at the tail end of a flair right now.
 
The first thing I do is get mentally prepared by making sure the window is clear on the pin and swabbing the injection area.

When I start the injection I move one leg by tapping my heal off the floor and counting to 8. By then the injection is complete and I take the swab and clean up any blood using care not to rub the area. Tapping my heal on the floor during the injection really helps me.
 
I always do mine while watching something on youtube. It gives me something to distract me from the sensations and the reality of what I have to do. Usually I'm online and have been chatting with friends, so I have that as a further distraction. When I'm worried about it hurting, I also ice the spot while I let the injection warm up, and then I don't feel it much. Most of the time I don't bother with ice, though.
 
Thank you... I'm thinking about icing or trying a numbing cream, and wondering if that might help with my anxiety a bit since that should prevent it from hurting as much. I think regardless I'll probably have to give in and ask my SO to help me next time, though. :( Does anyone use a specific numbing cream?
 
Hello, all of you beautiful people. My rheumatologist is putting me on humira. Although I know I have to, I am really nervous about it and wondered what anybody else has gone thru side effect wise. Any feed back would be great. Thanks :ylol2:
 
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