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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Extreme side effects from Humira?


10-20-2015, 11:00 PM   #1
paul11
 
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Extreme side effects from Humira?

Has anyone ever had these side effects from taking Humira or Cimzia- extreme nervousness, extreme insomnia and loud ringing in the ears. ?

From what my doctor says I seem to be the only one that has experienced this but dealing with it is almost as bad as dealing with the actual crohns disease itself. thanks for any replies.
10-21-2015, 03:43 PM   #2
Jennifer
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Are you taking both (Humira and Cimzia) right now?
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Diagnosis: Crohn's in 1991 at age 9
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Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-21-2015, 06:22 PM   #3
paul11
 
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Are you taking both (Humira and Cimzia) right now?
I'm on Humira right now but I cant take the necessary dose for it to continue to work. From my last colonoscopy it looks like things are starting to go bad again. My doctor said that Cimzia is in the same class but has a different molecule or something like that. The problem is I've never been able to tolerate meds. or supplements well at any point in my life. I think that cimzia will have severe side effects as well but I have no choice at this point.

thanks for responding. I feel so hopeless and lonely I really cant wait for all of this to end. Thanks again.
10-26-2015, 11:10 AM   #4
Roxymusic
 
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Paul11, hang in there until you find a solution that works for you. regardless of whether it is Humira or Cimzia, there are a lot of side affects from these drugs and while some will put your Crohn's in remission or at least better, they all have side effects. For example I have louder ringing at times than I did before Humira, but I went on Imuran too at the same time and I take prednisone on the injection day and the day after of a 2 week cycle to combat Humira fatigue issues. Yeah, side affects suck but better than being in pain all the time. Just curious, why lonely? There are lots on just this forum who are having a tough time with Mr. C (or IBS or cancer or something else too). We can sympathize with the why me thoughts though......
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DX Crohn's 1971
Crohn's Surgeries 1971, 1974, 1984x2, 1993, 2007,2016
11 Kidney Stones from 1996 due to resections
All the standard drugs/advice from the 70's 80's 90s
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Fish Oil, B12 injection monthly
Dec 21 2011 started Remicade
February 2012 off of Pentase!
Nov 2014 Back on Imuran
Jan 2015 off Remicade
Mar 2015 on Humira
June 2016 on cimzia
Dx short Bowel July 2017
10-26-2015, 12:42 PM   #5
paul11
 
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Paul11, hang in there until you find a solution that works for you. regardless of whether it is Humira or Cimzia, there are a lot of side affects from these drugs and while some will put your Crohn's in remission or at least better, they all have side effects. For example I have louder ringing at times than I did before Humira, but I went on Imuran too at the same time and I take prednisone on the injection day and the day after of a 2 week cycle to combat Humira fatigue issues. Yeah, side affects suck but better than being in pain all the time. Just curious, why lonely? There are lots on just this forum who are having a tough time with Mr. C (or IBS or cancer or something else too). We can sympathize with the why me thoughts though......
Hi Roxymusic, thanks for the response.
Unfortunately I don't really seem to fit in online for various reasons and the online thing doesn't really seem real to me. People drift in and out all the time. As far as real life, I haven't been able to work for the past ten yrs. bec. of crohns and mostly I've just been alone that whole time. (except for doctors). I had a fiancé right before the disease went really crazy on me and thinking back I wish I could still be living similar to that. I also have pretty bad social anxiety and depression so I haven't really seen my last three friends all that much. that was rambling as usual, sorry about that. Thanks again.(I do like coming on this site though although I still feel really hopeless.)Anything short of a total cure couldn't bring a smile to my face anymore.
10-26-2015, 01:47 PM   #6
Honey
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Hi there and welcome, I was on Remicade infusions and did well until I took a lung infection. Other meds did not work for me, or I had to come off because of side effects. It is like that, we are all individuals and we respond as such to treatment. I am currently well but I am having further tests as my Calprotectin results are sky high!!!! Humira has been mentioned to me for the next treatment. So, I understand how you feel. It can be very difficult to deal with so many changes. It can also make you feel very alone as people will not understand your concerns because they are not experiencing those difficulties. However, express your concerns to your Consultant and ask questions. It helps to be informed. This forum will help too ,talking to those who understand. Try to make time for other interests and enjoy them. I am a keen photographer and Artist. It is a good outlet. Do not stay in but get out to meet friends.
10-26-2015, 02:30 PM   #7
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Hi there and welcome, I was on Remicade infusions and did well until I took a lung infection. Other meds did not work for me, or I had to come off because of side effects. It is like that, we are all individuals and we respond as such to treatment. I am currently well but I am having further tests as my Calprotectin results are sky high!!!! Humira has been mentioned to me for the next treatment. So, I understand how you feel. It can be very difficult to deal with so many changes. It can also make you feel very alone as people will not understand your concerns because they are not experiencing those difficulties. However, express your concerns to your Consultant and ask questions. It helps to be informed. This forum will help too ,talking to those who understand. Try to make time for other interests and enjoy them. I am a keen photographer and Artist. It is a good outlet. Do not stay in but get out to meet friends.
thanks, but I have genetic social anx. disorder, depression etc... I do have a few friends left but have not one thing in common w them anymore. My life is nothing but suffering. The endless battle w this disease is sucking all the life out of me. I have no hobbies anymore because I just cant concentrate and pretty much just feel tired and anxiety ridden most of the time(all). sorry if that was ultra negative but I know life is only going to get worse and i'm not prepared for it. I'm not tough enough anymore I guess. Thanks again for your response though, I appreciate it.
10-26-2015, 02:44 PM   #8
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Hi there, Paul,
I do understand. You obviously suffer from clinical depression so you need to speak to your doctor about how you feel. It will be difficult for you coping with both illnesses, but there is always light at the end of the tunnel. I lost some friends who did not understand what I was going through, but I have made new friendships. Isolating yourself, and I did that for a while too, will only make you feel worse. Speak to your doctor. I do hope you start to feel better soon, sometimes it is getting a listening ear! Let me know how you get on. You are in my thoughts and prayers.
10-26-2015, 03:49 PM   #9
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Hi there, Paul,
I do understand. You obviously suffer from clinical depression so you need to speak to your doctor about how you feel. It will be difficult for you coping with both illnesses, but there is always light at the end of the tunnel. I lost some friends who did not understand what I was going through, but I have made new friendships. Isolating yourself, and I did that for a while too, will only make you feel worse. Speak to your doctor. I do hope you start to feel better soon, sometimes it is getting a listening ear! Let me know how you get on. You are in my thoughts and prayers.
Thank you Honey
10-27-2015, 12:11 AM   #10
Jennifer
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Unfortunately I don't really seem to fit in online for various reasons and the online thing doesn't really seem real to me. People drift in and out all the time.
True some people do drift in and out but there are many of us who have stuck around. I joined in 2010 and have made a lot of friends who I do talk to outside of the forum. We all live in different states or countries but talk on other social networking sites like Facebook and eventually shared phone numbers and talk on Skype. Online friendships are lasting ones even if you never see them in person, we're always here.
10-27-2015, 07:47 AM   #11
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I think I tend to be one of the drifters because I have a hard time dealing with the depression part. I tend to be one of the ones that flake out. I wish that wasn't the case though.
11-03-2015, 04:50 PM   #12
Roxymusic
 
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Paul, from your original post you talked about a loud ringing in your ears. I have one occasionally but hadn't for several weeks - Humira shot this AM, ringing all afternoon.....
11-03-2015, 05:57 PM   #13
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Paul, from your original post you talked about a loud ringing in your ears. I have one occasionally but hadn't for several weeks - Humira shot this AM, ringing all afternoon.....
Sorry to hear that Roxy.As I write this my head is ringing big time. I think that part of it is the easiest thing to get used to with time but the other side effects that I get are impossible. I know the ringing does suck though! Hope it goes away for you.
11-18-2015, 09:12 AM   #14
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Hey, I too have the ringing in my ears... I had it prior to - I thought it was from the entocort (I had been on it five months) but it is certainly more persistent now after being on the humira. Its hard to me to relax/meditate spend any quiet time as I have this horrible tinnitus. I plan to go to the ENT. I hope it goes away soon for you! if you find a cure let me know! lol
11-18-2015, 01:44 PM   #15
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Hey, I too have the ringing in my ears... I had it prior to - I thought it was from the entocort (I had been on it five months) but it is certainly more persistent now after being on the humira. Its hard to me to relax/meditate spend any quiet time as I have this horrible tinnitus. I plan to go to the ENT. I hope it goes away soon for you! if you find a cure let me know! lol
Oh yeah, no problem. If I ever find anything that helps I will def. let everyone know on here. It's not the worst side effect but it def. doesn't help. Nothing like actually HEARING silence.
11-18-2015, 11:12 PM   #16
Jennifer
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I don't remember if you mentioned seeing an ENT or not paul11, have you? What did they say?
11-20-2015, 09:56 PM   #17
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I've had two shots of Humira so far. I got a tingling tongue both times. The first time I didn't think much about it, since it was the first shot. But I'd forgotten about it and only remembered what happened after the first shot when I got a tingling tongue the second time. I keep purring as way to "scratch it"..people give me weird looks
11-20-2015, 10:00 PM   #18
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I don't remember if you mentioned seeing an ENT or not paul11, have you? What did they say?
Hi Jennifer, not sure what ENT is?
11-22-2015, 02:45 AM   #19
Jennifer
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Hi Jennifer, not sure what ENT is?
Ear, nose and throat specialist. They may be able to help with the tinnitus.
11-22-2015, 08:31 AM   #20
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Ear, nose and throat specialist. They may be able to help with the tinnitus.
Oh yeah, my memory is so bad that I actually figured out what that meant and then when I went back to answer you I forgot again.

I did see one of those at one point when I was trying hyperbaric treatment. Turned out I do have something wrong with my sinuses.

Pretty sure if I went to one again they would try to give me another med to take which I would refuse. It's a pain to deal with but i'd rather just suffer with it like everything else. Its prob. the least annoying of all the side effects anyways.

Thanks Jennifer.
06-19-2016, 05:47 AM   #21
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Hey ringing in the ears is my new worst best friend. Have had chronic tinnitus since I was hospitalized last summer and put on a large dose of cipro. Someone else I know who doesn't have crohns mentioned he got the tinnitus after being on cipro and doc confirmed this. Maybe this is the cause of your ringing as well. I've been meaning to get to an ENT but who has the time?
06-26-2016, 11:33 AM   #22
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I experienced nervousness and insomnia and most of my nervousness was in the middle of the night. I would finally fall asleep and I would wake up feeling as if something rotten was going to happen. My Dr. prescribed a benzo to see if helped. I took it for one week and as I adjusted to the medication, I have needed it less frequently. I think I have taken it once in the last month. We are all different and react differently, but hopefully you will find something that works for you or your body will adjust.
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