for those of you on humira--headaches

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malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 3/19/2009 5:13 PM (GMT -7)   
I have read on some of the posts that people have gotten headaches from this stuff.  Does the headache ever go away?  I did my first set up shots this past weekend and have had a constant headache for the past 3 days.  And if you DO get headaches what do you guys do about it?
 
I also experienced problems with my vision for the 1st hour after I got my shot and a burning feeling on the injection sites for the past 4 hours afterwards .  (I split them up into 2 shots for 2 days and both those happened each time and made sure the )  I DO feel better but hearing about these side effects is making me uneasy
 
I'm just curious and thanks for your help.
Newbie - 37 yrs old Diagnosed: 08/03/07
Meds:
Started Humira 3/14/09.... <crossing fingers>


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 3/19/2009 7:05 PM (GMT -7)   

Hi,

So sorry to hear you're having such bad headaches---they can certainly be miserable!!  I have been on Humira for about 3 months, and have not seemed to have any Humira-induced headaches.  Actually, getting headaches from Humira was one of my big concerns prior to going on it, as I suffer from frequent migraines and didn't want "just one more thing" contributing to them!  Fortunately, I've lucked out in that respect.

You might want to talk with your gastroenterologist about this side effect you're experiencing; and you may also get some great feedback about this from the Humira support program website.  Not sure if you're familiar with it, but their support program has nurses available (I think 24 hours per day) that will take phone calls and answer any questions you have about Humira.  I've called several times with questions and concerns, and they've always been very helpful.  Here's their website:  http://www.myhumira.com/  On the left side of their web page, you can click on "Talk to a Nurse".

I hope you can find out if this is a "normal" side-effect of Humira (and if it will go away); or if this is a serious adverse side effect.  It's always best to check it out.

Good luck, and please let us all know what you find out and how you are doing!

Take care---

 

 

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/19/2009 10:46 PM (GMT -7)   
I occasionally get a mild headache, but not often, and nothing serious. I hope yours will go away with a little time! That would be terrible to have to deal with.

malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 3/19/2009 11:28 PM (GMT -7)   

thank you spookyhurst and blossom for your input....

I will try to contact the humira nurses tomorrow.  they are in a diff timezone than me.  8am-8pm est Rats! 


Newbie - 37 yrs old Diagnosed: 08/03/07
Meds:
Started Humira 3/14/09.... <crossing fingers>


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 3/20/2009 12:48 AM (GMT -7)   
Hi I also started Humira but I did not get headaches. Also my vision was fine. I hope the nurses at humira
can help you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


Wonderwen
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 3/20/2009 9:49 AM (GMT -7)   
I had my first round of shots and have had no problems. Hope your headache goes away soon.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/20/2009 10:19 AM (GMT -7)   
Malakai, please let us know what you find out.  I've been on Humira since June or July and haven't had any headaches, but have noticed a huge change in my vision.  I don't notice it after the shots, so I didn't associate the two.  But, since my last eye exam 2 yrs ago, my vision got worse by 4 or 5 "steps," which the dr. said is very rare for my age.  She didn't know which of my medicines could have caused it other than prenisone, and I've only been on it for a couple of months.  I've noticed my vision being worse since the summer probably, which is when I started the Humira.  I looked it up to see if it was a side effect of Humira, but didn't see it in info provided by the drug company.  I will ask my GI and rheumy when I see them next.   

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/20/2009 10:26 AM (GMT -7)   
I just searched online and did find a few sites indicating that blurry vision is a "less common" side effect of Humira, but again, this wasn't from Humira's website, so I don't know how accurate it is.  I would ask your GI. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 3/20/2009 5:22 PM (GMT -7)   

called the humira site and they said that headaches were VERY common in humira patients but didn't give me any options for what to do about them.  She also recorded my vision issues and said that a humira pharmacy rn will be calling me on mon.  will ask them about the vision and headache stuff if and when they call.  Interesting... 

They took a lot of demographic info on me.  Age, height, weight, address, what ethnicity I was, what meds I used to take prior to starting the humira etc.  I know it is true but it still makes me feel wierd that we are all test guinea pigs for these companies. 

Have a great weekend everyone and thanks for all your input! 


Newbie - 37 yrs old Diagnosed: 08/03/07
Meds:
Started Humira 3/14/09.... <crossing fingers>


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 3/20/2009 5:23 PM (GMT -7)   
by the way, teddybearwiser, you said that you were on humira but it looks like you are on remicade now.  what made you switch?

Newbie - 37 yrs old Diagnosed: 08/03/07
Meds:
Started Humira 3/14/09.... <crossing fingers>


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 5/24/2009 8:45 PM (GMT -7)   
ZenaWP - I searched high and low for this post...  My vision IS changing.  I am going to make an eye dr appt.  I normally wear glasses or contacts and at first I thought that my contacts were old or my eyes were dry or my headaches were just too bad that my vision was "off" but now I'm noticing that when I'm reading things, they dont look right.

Diagnosed: 08/03/07
Meds:
lamictal 200 mg/asacol 2 pills 3x day/imuran 100mg day
Started humira 3/14/09.... pulled off due to migraine side effect.  Dealing with Migraine since then with no end in sight... 


moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 5/27/2009 6:03 AM (GMT -7)   
I was on Humira for 18 months. Just switched to Cimzia. Headaches didn't start for me until about 8 months ago.(these are the kind of headaches that are very noticible as I would just go to bed and say there) If they lasted for long periods more than 4 hours I would take a percocet which usually did the trick. Percocet for me is like tylenol. My system does not respond to most pain meds or anesthia. I use the percs very sparingly as I am afraid that I will become immune to the effects. When speaking with Humira nurses thay said that they are having more people report headaches particular if the patient had been on the med for a few months or so. My vision also changed. I changed scripts 3 times in one year then everthing plateaued. Some of these things could simply be aging but I am very careful to make a note of any new issues that arise. Please keep track of you daily side effects and if something doesn't feel right call your Doctor and utiliz3e the Humira nurses. They can be a big help. Good luck to you.
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia.
 


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/27/2009 12:39 PM (GMT -7)   
Hey, I have been on Humira for about 2 months now and have noticed headaches and blury vision. Havent talked to the doctor about it yet. I don't think I will be on it for much longer. It seems to be making all my symptoms worse. I think Remicade will be my next otion for the time being and then Surgery :(.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 5/28/2009 7:35 AM (GMT -7)   
thanks for sharing your experiences with me. Yeahhh the headaches I have weren't just geeze my head hurts and I'll pop a couple of advil kind of headaches. They were let me stab you in the temples and back of the head with an ice pick and bash you on the top of the head with a hammer. the only thing you could do to contain them is lie down and force yourself to sleep kind of headaches. The good days have pain level 5/10-6/10 (which i learned to live with cause of the crohn's side pains) and real bad days are 7/10 - 9/10 being please just hack my head off because I dont want it attached to me anymore.

One time is was so bad I went into the ER because I had to study for a test (yes I'm trying to do all this stuff AND be a college student and work 32 hours a week) and asked for a toradol shot (which is a non narcotic wonderdrug that normally works for me) and once I got it, it didn't even touch it. I cried and freaked out because I had never experienced not being able to have pain relief before and unfortunately when I get dialudid which they give me when my crohn's flares, i spend the next week recovering from the side effects from that. I have a new appreciation for people that are unable to tolerate pain medications and have to live with things just numbed down a bit. I dont know how you do it. I also have a new appreciation with people with nerve damage. Again, it is definately eye opening and made me realize how much we depend on the drug manufacturers for meds and how strong the meds could be. I just found out last week that the imuran and asacol is making my brain atrophy faster than someone my age and it's not really like I can just stop taking the medications because i have to take them for my crohn's. I go to an acupuncturist to manage the pain on my R side fr the crohn's and when he was working on me for that he tried to help me with my headaches and i probably got 30 min of relief and it would come back again in the same intensity. It is very frustrating.


My dr wanted me to go on remicaide also but I told him no more new meds until I got rid of these headache since the side effect of the remicaide is ALSO headaches and I wanted to be able to seperate the two drugs from each other. I am fortunate that the most I go to the bathroom is 12x a day and told him I would rather live with that on my imuran and asacol than be bedridden because of the headaches. I wish my ins company would pay for the cimizia. I wouldn't mind trying that but I'm just grateful that my crohn's is some what controlled.



Chronicallyill. i would definately tell your doc about your side effects. They pulled me off the humira on April 14th and I STILL have the headaches and now am seeing a neurologist because no one knows what to do with me now. (it's been over 70 days of fun) the quicker you can get that stuff out of your system or atleast tweak it so it works WITH your system, the better.

moedon1 - I'm glad that you were able to go on the cimizia. =)
Diagnosed: 08/03/07
Meds:
lamictal 200 mg/asacol 2 pills 3x day/imuran 100mg day
Started humira 3/14/09.... pulled off due to migraine side effect.  Dealing with Migraine since then with no end in sight... 

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