Seizures with Humira

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New Member

Date Joined May 2008
Total Posts : 4
   Posted 5/31/2008 5:46 AM (GMT -7)   
I have a 22 year old daughter has had juvenile rheumatoid arthritis since she was 13 years old. She was once in a wheelchair for 3 years and since then she was in and out of it for about a year or so. Right now she is not in one which is great but her RA is not doing so well and she has an appointment with her Rheumatologist in a couple of weeks or so to discuss it with him.
Anyhow, in the past few months my daughter has been having some strange symptoms when she wakens from sleep in the morning. She more or less says her head feels pressure but it is NOT a headache or a migraine and is it NOT her sinuses. She says that she can not communicate and if she has to it is extremely difficult to get the words out. Her eyes will flutterly a lot and her mouth makes weird movements and her arms will shake. She has to sit down or lay down. This will last for 2-4 hours. She says it feels as if someone is shaking her brain around and it is very painful but she is very clear that is it NOT a headache of any sort. This all started about 9 months ago.
Over time it has gotten worse. Because of insurance and it is hard to get into her regular physician and transportation problems it has been hard to get this figured out and very frustrating. Mostly it has been the doctor's fault in taking this long. I am at my wits end and will be letting the doctor know when we see her in about 2 weeks as she also has an appointment with her. This is serious stuff as it is getting worse.
After the 2-4 hour period is over my daughter does not know anything that has been said to her during that time period and for about 1-2 hours after that when she is up and about she will repeat stuff and not know that she has done so and gets frustrated; so in effect she is having short term memory loss at that time.
Now what is happening every day during the day is she having these same exact symptoms that she has in the mornings but for a shorter period of time. It can happen any time of the day just out of the blue. She can be standing just talking and all of a sudden boom she starts to have like a seizure (like is now what I have come to think of them as). But during the day they only last about 10 minutes. Afterwards she is wiped out and doesn't feel so well for about 30-60 minutes. It is not safe for her to be alone now as you never know and I am concerned.
She had a MRI on her brain and it came back normal; she just had a sleep study and it came back normal just this week. The one thing my daughter and I were talking about was could this be related to Humira since she takes Humira. She takes nothing else. She takes Humira once every two weeks.
I personally think that she should have more tests done.
Oh also there are times when her head actually swells for a few hours and you can actually feel it. It is really weird. She is on medicaid and you just can't go to the emergency room unless you are practically dying and we don't have a vehicle; it's a rough situation.
Any thoughts?

New Member

Date Joined May 2008
Total Posts : 4
   Posted 6/12/2008 11:50 PM (GMT -7)   



I can see that no one has replied to my post unfortunately. Maybe it's because no one had any answers, etc. since it is a complicated situation.


I just wanted to people to know that my daughter's sleep study showed no sleep problems which included no sleep apnea. And her MRI on her brain was shown to be normal even though I have talked to her to look at the report herself to just double check it.

She has seen her rheumatologist and he told us that he believes that the seizures are NOT the result of the Humira but he did do some blood work on this past Tuesday and we have not yet received those results. He was extremely concerned about the seizures so he did make a personal phone call to her regular physician that we did not know about. She saw her regular physician today. Unfortunately because of my health problems I was not able to accompany her today to her doctor visit.

Apparently her regular doctor is extremely concerned for my daughter. She has put in a referral for her to see a neurologist. She even said that her referral is NUMBER ONE now and will be personally handled by the doctor herself. The doctor called me and told me to not let my daughter go anywhere by herself or leave her alone and if she has one seizure after another then to call 911. Let's just say she is worried. I have been concerned because I am around my daughter all the time. There has now been 2 times when my daughter has been coming out of a seizure where she has tried to go back into the seizure or the like; it was very scary. I can't even express how hard it is for me to see her like this. It is like watching a brain damaged person during a few minutes and it makes me cry inside. I can't even imagine how she is feeling inside. I am absolutely scared inside.

These seizures happen every day when she is waking up and once during the day before bedtime.

Veteran Member

Date Joined May 2006
Total Posts : 1179
   Posted 6/13/2008 4:37 AM (GMT -7)   
Hi Oregonian, so sorry you did not get any responses to your post. I know i am ill equiped to answer your question but as a mom I understand your worries and concerns. I hope that the neurologist will find some answers that can be addressed without further worries. I have two almost grown daughters and I know I would be besides myself if they were going through what you are. please know you and your daughter are in my prayers and i do hope to hear back from you as to what the neurologist finds. arthritis related or not feel free to post an update and know many of us care I am certain we just had no answers to post. again sorry and a huge hug to you both ((((((((((((((((((((((((((((((((((()))))))))))))))))))))))))))))))))))))))))))))))) yally

Regular Member

Date Joined May 2007
Total Posts : 499
   Posted 6/13/2008 8:16 PM (GMT -7)   
Hello there,
I must also apologize that you didn't get a response on your first post...I haven't been checking the forum very well for about the past month, I just missed it. 
I am so very glad to see that the doctors are taking this situation so seriously.  How soon will you be able to get into the neurologist?  I pray they are able to see your daughter very soon.  I'm not familiar with Humira, I take different meds for RA, but it sounds like the doctor has already addressed that issue.  All I can really offer you is the support of one mother to another.  I have a 23 year old son with diabetes, and have held him through many seizures due to blood sugar problems...there is nothing scarier that to watch your child go through those things. It is heartbreaking.  Please know that we will be here to do what we can to help.
Bless you both,

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 6/13/2008 8:26 PM (GMT -7)   
I did not read you post earlier because I know nothing about humira. However, I work with a lot of people who have seizure and this definitely sounds like seizures. The protocol where I work is that when a person without a known seizure disorder has a seizure, or a person with a known seizure disorder has a seizure lasting more than 5 minutes we call 911. A seizure is a medical emergency and even with medicaid a seizure should justify an emergency room visit.
Seizure medications have gotten quite good and although like all meds you sometimes have to search for the right one or the right combination proper medication should improve your daughters quality of life remarkably.
Good luck finding good answers.

Veteran Member

Date Joined Mar 2005
Total Posts : 3199
   Posted 6/15/2008 1:01 PM (GMT -7)   

Hey there Oregonian, sorry for my tardiness in replying.. Ok, I looked up Humira (I'm on Enbrel) and this is what I found:

What are the possible side effects of Humira?

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Serious and sometimes fatal infections may occur during treatment with Humira. Contact your doctor right away if you have signs of infection such as:

  • fever, chills, sore throat, flu symptoms, weight loss;

  • joint pain or swelling with fever, swollen glands, muscle aches, nausea, vomiting, unusual thoughts or behavior, and/or seizure (convulsions);

  • patchy skin color, red spots, or a butterfly-shaped skin rash over your cheeks and nose (worsens in sunlight);

  • chest pain, ongoing cough, coughing up blood; or

  • easy bruising or bleeding, pale skin, unusual weakness

So it looks like the seizures can be a side effect of the medicine.. Did her rheumy say why he doesn't think it's the Humira causing them?  I know my rheumy has told me a couple times that the side effects I have from Enbrel don't have anything to do with the med.. but I didn't have it before I started taking it, and if I go off it for a period of time, the side effects go away.. Is there anyway she can get a 2nd opinion?  When is her appt with the neurologist?
Please let us know how you and your daughter are doing.. Oh, and I got the information above, from this website:
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ

New Member

Date Joined Nov 2012
Total Posts : 2
   Posted 11/7/2012 9:52 AM (GMT -7)   
My daughter is 9. She was diagnosed with JRA when she was 7. She has been taking humira injections for a little over a year now. She just started 2 nights ago having seizures is what I'm calling it as well. She gets up while she's sleeping and she's very disoriented/confussed, she says her head is killing her, then she starts shaking...the spell only last like 5 mins total. That makes 2 nights in a row. We went to primary care this morning and she said it certainly sounds like seizures to her. CRS is setting up an EEG for her asap. We've had no other issues since we've been on the humira injections. This is all so new. I'm sorry your daughter is goin thru this...I'm glad I decided to google this. Maybe we can help each other figure this out. I honestly believe its seizures cause by the humira.

New Member

Date Joined Nov 2012
Total Posts : 2
   Posted 11/7/2012 10:01 AM (GMT -7)   
I just seen the date from orgeonian...I was just wondering if she ever got any answers?

Forum Moderator

Date Joined Nov 2003
Total Posts : 7119
   Posted 11/7/2012 5:52 PM (GMT -7)   
Seizures are a side effect of Humira. It is an extremely rare side effect. I hope your daughter recovers quickly.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

New Member

Date Joined Feb 2015
Total Posts : 2
   Posted 2/7/2015 6:05 PM (GMT -7)   
I firmly believe that Humira was the cause of my grand maul seizure. Especially after reading your daughters experience. I am sorry she is going through this, or by now I hope she has had a chance to heal. Right away I started having side effects from the humira and the Dr tried to convince me to keep taking it but I stopped. Then weeks later I had the seizure and got the epilepsy dx.

New Member

Date Joined Feb 2015
Total Posts : 2
   Posted 2/7/2015 6:25 PM (GMT -7)   
Btw I was put on it as a TX for as dx of crohns. I fought the Dr for 4 years before I gave in and went on the junk as I was terrified of needles for the longest time. I'm no longer afraid of them but I did have the biggest phobia. I always thought that humira was quite an extreme treatment for crohns, guess I'm finding out that I was correct. I have always known that most Dr are all about selling the high cost drugs to people...but does it have to be at the expense of our well being?
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