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Crohn's Disease Forum

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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.
 
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
 
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.
 
loriwithCrohn's said:
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
Click to expand...

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
 
my little penguin said:
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
Click to expand...

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!
 
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?
 
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.
 
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:
 
At the risk of giving you false hopes, I took my 4 loading shots at the doctor's office so they could go over it with me. I think I may have even skipped breakfast that morning because I know we were still without power after a hurricane had come through, and food options were limited (I might be confusing it with the morning around then that I got bloodwork done, or maybe it was the same day). I was fine to drive back from there, stopped somewhere for something to eat. It was a 30 minute drive, and not the usual office I went to, so an unfamiliar location, too. I had my boyfriend with me just in case, but I had no trouble.
 
i just took my second loading dose today. ive had crohn's for a few months and the arthritis appeared this past week. I think it helps. my appetite came back the day after the first dose, and my other symptoms have been slowly going away, which is how the humira advocate said it would work. the nurse that gave me the shots said she has seen it work wonders for other people. still be careful of diet tho.
 
I've had crohn's for 17 yrs. I swore off a medicine after 2 yrs but back then they didn't have the meds they do now. I had periods where I was sick and well. I have been on asacol for 7 yrs off and on with prednisone but not long term. I was really bad about going to the doctor. Apparently now it's time to pay the piper, though. I got dx w/ hashimoto's 7 yrs ago and now ankylosing spondylitis just in the last month. I guess I just worry about all the cancers associated with humira. Because I don't need anything else on my plate right now. :)
 
autoimmune queen said:
I've had crohn's for 17 yrs. I swore off a medicine after 2 yrs but back then they didn't have the meds they do now. I had periods where I was sick and well. I have been on asacol for 7 yrs off and on with prednisone but not long term. I was really bad about going to the doctor. Apparently now it's time to pay the piper, though. I got dx w/ hashimoto's 7 yrs ago and now ankylosing spondylitis just in the last month. I guess I just worry about all the cancers associated with humira. Because I don't need anything else on my plate right now. :)
Click to expand...


I think cancers are actually more of a concern with immunosuppressants than biologics... but even then the chance of actually getting cancer is very low. I've been on biologics for over a year with no problems. Humira helped me instantly and has been great for me.
 
autoimmune queen said:
Thanks everybody. I guess I just need some reassurance :)
Click to expand...

My biggest problem is the spondylitis as well. It has been devastating to my quality of life. It almost feels like a nightmare. I keep waking up thinking its gone and then the pain slowly starts in my hips and buttocks again and lasts the whole day. I can barely do much. This year has been awful for me. I never knew Crohns can cause this much damage. Dealing with a lot of dark thoughts today. I miss being the fun and energetic mom I was.

How long have u had AS and how does it impact your life? I'm starting humira soon and it pains me to think that I now need meds to remain mobile and functioning!!!
 
jajabinks, i noticed you take glucosamine. make sure it is glucosamine SULFATE, not hydrochloride. you have to order it internationally.

my academics are also on hold, i know how you feel.
 
Ankylosing spondylitis started 13 yrs ago but it took this long to diagnose it. Partially my fault because back drs.just loaded me up on pain meds which then affected my crohn's ajd my head. So I stopped going. I had no idea they were connected until high dose prednisone took all my pain away. Its been along time and a lost career that didn't have to be so awful. But I am stubborn and hate medicine. I have a 19 year-old and a 6 year-old (really bad pregnancies). I am really tired of not being able to play with him. When it finally moved from my ankles to my entire foot and I was having trouble walking, I had had enough. But to be honest hashimoto's hasn't been a walk in the park either. Autoimmune diseases are the gifts that keep on giving. :(
 
Turn that emoji frown upside down @autoimmine queen ! I started Humira in May and it's kicking in and I feel so much better physically and emotionally!
 
It's different for everyone but the way I look at it is this:
I can be on Humira (started with Remicade, but it wore off too quickly, and they had to switch me, but it's what initially got things under control) and have some annoying symptoms, some mini-flares, but also occasionally cheat a little bit with certain food items and not pay for it too badly. Or, I can be in horrible pain, on the toilet every 2 hours to go bleed, and risk losing my colon entirely. That's the difference between where I was and where I am. Prednisone and Asacol while on a clear liquids diet in the hospital barely had an impact on me.
 
I am really hopeful it will work. I am just really tired of getting hit with diseases. I have three autoimmune diseases so far and no family history of any of them. I'm just having a miniature pity party for myself :( I am 40 and exhausted. This is the year I set out to get my body back it's just not working out the way I planned. Sorry for my rant. I just have to be More positive about new meds I guess :)
 
Sometimes that's how it goes, and it's ok to feel bad about it. I can relate, if not to having multiple autoimmune disease, having multiple health things going on at once. This has been a bad year for me, too, and I'm still struggling. Sounds like we're both going, "I'm not supposed to feel like this at this age!"

If you want someone to talk to, vent to, whatever, I'll be glad to listen.
 
My head is just screaming. I am doing everything in my power not to let anyone see it because when I fall apart my entire family falls apart. I am just not coping well right now. I am sure it will get better. Thanks for all of the support. I don't think anybody else(or group) would really understand :)
 
I started humira about 2 months ago (wow time flies). Best way I found to do it was have my girlfriend count to 3 and then immediately count to 10 so that I don't have to just do it and then have to count as well. She doesn't watch me do it, she just sits on the bed or couch and watches tv. She can't stand to look.
 
So I had the Humira Ambassador come to my house yesterday for my injection. After the huge welt I got on my leg after last time, my GI just wanted to insure I was doing it right.
I showed her where I did it last time and the picture that I took the day after. She said that it MIGHT have been because I did it too close to my knee where there isn't much fat. However, when I did it yesterday, she said I did it perfectly and I woke up today with a similar (but smaller and softer) welt where I did my injection.
I didn't have any benedryl this or last time, so next dose I am going to take that before and see if it makes a difference.
The lady said as long as it isn't an allergic reaction and instead an injection site reaction that there will probably be no issue of me staying on it, I just need to let my GI know.
 
Does humira help with your eyes and arthritis. I have uveitis. It gets bad at night but worse when I am stressed. Injections don't sound like alot of fun.
 
Well, it can. Humira weakens the immune systems ability to attack the body. The reason why you have uvetis is because your imune system has confused the cells in your eyes with the cells in your GI tract, so it started attacking those too. Are you on the steroid drops for that?
 
I was. I can only go on them every other month. Supposed to be on restasis. But my insurance won't approve them. They said there is no proof that the work :( it's funny I used to just feel like crap all of the time but in the last year I can see and feel the inflammation all over. I know I have to take it but I just start going over all of these medicines I have to take everyday to survive and adding one more that I will be stuck with, that I have to inject myself with seems to much.
 
Hello,

Let me first say that I'm incredibly sorry that everyone on this forum either is sick themselves or has a loved one that is. My most sincere and genuine condolences to all of you and I wish you all recovery at best and improvement or maintenence in the least. The reason I'm on this forum today is because I have a chance to participate in a 9 day paid clinical trial that pays $4,850 that involves Humira injections and I want to know if anyone here has any advice as to if it is too dangerous of a risk to take or if it is of
relatively low risk given such a short duration of treatment.

Thank you very much.

Gabriel
 
fissure2 said:
jajabinks, i noticed you take glucosamine. make sure it is glucosamine SULFATE, not hydrochloride. you have to order it internationally.

my academics are also on hold, i know how you feel.
Click to expand...

Thanks fissure. I believe it is sulfate but I will double check. I miss school n my campus dearly. :( wish my doctors warned me about these types of complications. Guess I was naive about this disease.
 
It's a study that calls for participants that take no meds and have no health problems. Their purpose is data of some kind and mine is money (being that I recently lost my job).
 
This still doesn't make any sense to me. Nine days? Are they giving you Humira for 9 days? At what dosage? Humira is usually 40mg every two weeks.
 
That would mean that you would be the control. But no guarantee that you would be on it or placebo other wise their data would be worthless. I have to go on it and am scared to be on it. But my fear stems from bad reactions to medications. I guess if I were healthy I wouldn't want to break that streak of luck. Because that's what it is, luck of the draw, genetically speaking :)
 
autoimmune queen said:
That would mean that you would be the control. But no guarantee that you would be on it or placebo other wise their data would be worthless. I have to go on it and am scared to be on it. But my fear stems from bad reactions to medications. I guess if I were healthy I wouldn't want to break that streak of luck. Because that's what it is, luck of the draw, genetically speaking :)
Click to expand...

It sure is luck! I haven't been lucky in all ways... I've been a musician for half my life but I've been depressed and anxious since I was 11. I may have the creative/unstable gene. I heard a psychologist say that depression was the worst disease you could get because basically it's the inability to enjoy a sunset. I'm not saying it's the "worst" but it definitely makes you want to die all the time. Lol
 
Jajabinks said:
Thanks fissure. I believe it is sulfate but I will double check. I miss school n my campus dearly. :( wish my doctors warned me about these types of complications. Guess I was naive about this disease.
Click to expand...

yeah i miss being active, and regular human contact. Doctors try not to scare people. ask your doctor about humira, its working for my arthritis.
 
So over all does the good out weigh the bad with Humira I will probly be starting it in the next few weeks and I am kinda stressing about it from all the bad I've heard. I am so newly diagnosted and have only tryed steroids and they haven;t helped at all so guess this is the next step from what the doctor tells me.
 
well mainly the risks of random infections and chance of cancer. I've never liked going on any kind of medication before a year ago when this all started the most medication I ever took was for getting my wisdom teeth taken out and i could only stand taking those pain meds for about 3 days then just tylenol. I dont like that meds mess with emotions and nerves.
 
I was totally the same about meds. It had been years and years since I'd taken abx before diagnosis in Feb. So in regards to the infections, yes, that part sucks. Take precautions and vitamins and try to accept that risk. Regarding the cancer risk, that really freaked me out. I have three young kids. I read all the pop literature about all the things everywhere that can cause cancer. But here's the thing, just the existence of Crohn's inflammation increases your risk of cancer. So avoiding a treatment that could prevent all kinds of other serious medical issues isn't logical.
And few people have major side effects with Humira. Usually just site reactions, a few headaches, etc.
 

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