for those of you on humira--headaches

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---

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! 

I had my first round of shots and have had no problems. Hope your headache goes away soon.

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. 

by the way, teddybearwiser, you said that you were on humira but it looks like you are on remicade now.  what made you switch?

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.

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. =)