TNF Blockers and Headache -- Humira, Enbrel, Remicade, etc.

[LR23]

I am trying to figure out if my headache (ear, eye and neck pulsating, pressure and pain) is related either directly or indirectly (infection) to Humira.  Is anyone else having headaches and/or CNS problems due to one of the TNF Blockers? If so, I would be interested to know your symptoms.  Thanks.

[Shaley Girl]

I use Enbrel and usually get a headache near my right eye for a day or two.

[LR23]

Thanks for your reply.  Is there anything that helps your headaches?  Tylenol, Advil, Excedrin and Flexeril do not help.  I get a little help from Percocet, but I try not to take it.

I get a headache about two days after taking Humira.  It is a pulsating near my right eye, ear and neck.  The side of my head feels pressurized and I usually get nauseas.  Movement of my neck makes it much worse.  

The headaches started about six weeks into the Humira treatment.  At first it only lasted two or three days.  In the last three weeks I have been dealing with continuous bouts of pressure and pulsating.  They have gotten so bad that I am starting to lose my concentration, forget what I am saying and doing -- wrong way on the metro, can't recall words., etc.

I reduced my Humira from 40mg to 20mg and have found that I am back to having only a two-day headache after injection.  But, I'm conflicted since the Humira is working for me.

Any suggestions and/or similar reactions would be appreciated.

[Shaley Girl]

Is there any chance that you have a sinus infection?  Immune depressants like Enbrel and Humira unfortunately allow an infection to rage.  My right eye had been throbbing and pulsating for many weeks so I went to my PCP last week.  Lo and behold I had such a raging sinus infection that I also had secondary bronchitis.  I have known many people on a biologic that fight sinus infections constantly.  Personally I need to stay on the Enbrel and just pay better attention to symptoms.

[LR23]

Thanks for your reply Shaley Girl.

I brought up the idea of a sinus infection to my neuro.  He seems convinced that this is an atypical migraine.  My CT scan and physical exam showed no real problems with my sinuses.  The neuro gave me some Topamax which I will probably try soon.

I am going to an Ear Nose and Throat doc next week for another check, just in case.

At this point, my headaches (and pulsating) seem to be related to movement of my neck.  It's like I trip a nerve if my neck is moved into the wrong position and BOOM, I get a huge headache that just won't go away.

[NewLeaf]

I am on the new med Rituxan for my RA. 2-3 days after an infusion I get migrane headaches that last for a day or two. When I was on Enbrel I never had a headache associated with the medication, but after about 8 years of being on a TNF inhibitor,  I started getting some serious infections that made it so I had to stop the Enbrel completely and do with nothing for about 2 years for my RA.  OUCH. Please be careful to watch for infections and take care of them as soon as you know, my immune system was so thashed that my infections included  fungal ones that nearly killed me and required daily trips to a cancer center where they gave me infusions (had to live with a central line for about 6 months) for it.

Enbrel and Humira are great drugs, don't get me wrong here, they give us our lives back from RA but
PLEASE BE AWARE FOR ANY POSSIBLE SIGNS OF INFECTION.

[ceci251]

just happened to find this website as I was desperatly trying to find information for  my headaches. I have been on Enbrel for 18 months and started having migranes this summer. Almost every week it come to my right eye, neck. Pulsating feeling and dizziness. I too got antibiotics for a sinus infection.
I take advil, but does not not always help. Otherwise I feel great and have gotten my life back. I just wish I could get rid of the pain in my face. CG

[LR23]

My doctors suspect that my headache, neck pain, stiffness and eye pulsating are a combination migraine and tension headache.  I did not have them before Humira.

My numerous doctors haven't been able to pin this on Humira directly, but I don't take many drugs and very little else had changed before I first got these headaches.  It doesn't seem like Humira causes them -- Humira appears to make me more sensitive to them.  And they happen in clusters.

First, I would suggest getting a brain MRI just to rule out infection, swelling, tumor, etc.  It will probably be normal, but sudden onset headache really requires investigation.

Second, Imitrex (as needed) has been a godsend for me to forestall these headaches and pulsating.  Topomax (topamax) was even better but had a lot of CNS side effects.

Third, you might want to see if your doctor will allow you to reduce your Enbrel amount slightly to see if that reduces the headaches.  For example, with Humira you might try 35ml instead of 40ml.

Humira has worked wonders for my Crohn's Disease, so I can understand the need to stay on these drugs.  I hope these comments are helpful and that you are feeling better soon.  

Let us know how it works out.  

[catherinek]

I have been on Enbrel since May. In August developed deafness in right ear. This happened instantly, not complete deafness but more like a pressure problem, similar to that felt in an airplane but severe. I now have it in my left ear and finding hearing very impaired. ENT consultant non the wiser so no help there. Has anyone else had similar problem?

[christine770]

Has anyone has swollen lymph glands with pain under the chin, tight throat but no signs of immediate allergic reaction or infection?? My neck feels swollen and tight but I can breathe fine. So weird.

[smittygirl]

I have been on Enbrel since March 23rd and so far have had no problems.  Since so many of you have been on it much longer than I,  may I ask some questions.  My Dr. is thinking about putting me on Remicade instead.  Anyone start on Enbrel and switch to the Remicade?    For those of you on it for your various diseases ( I have AS and ReA ) do the meds completely take away your pain and stiffness or just lesson the severity of it.   I still have very tough mornings with pain and stiffness and as it is with AS the more I move the better I get, but mornings and night are still no different than before I was on the Enbrel.   Thanks in advance to anyone with some answers.  Hope you all feel better soon.  Be well.

Sue

[Mikkimoe]

I've been on Enbrel for 4 or 5 years and yes I have migrains and I often get swollen glands in my neck - it has always worked pretty well for me - (except have had a lot of surgeries) but was rarely sick until I ended up with Hep C last year and have had the horror trip of my life getting the chemo tx for it - I finally had to stop due to the extreme RA - Fibro flare - could not move the pain was so bad.
I stayed on Enbrel during the tx but it seemed to make me worse every shot so I have not taken it for a few weeks and am trying to figure out what to do next.
I may need to take more - maybe the effectiveness is wearing off - I really have liked it...but may have to move on to Rituxan...have tried most everything else....maybe not humeria though.

As for the ears - I have tinitis but thats it.

Mikkimoe

[cherry86]

I started Enbrel fall of 2005 and switched to Humira this past May because my JRA (I'm only 23) is still progressing... badly.

I never had headache's growing up, and because I started Enbrel my second year of college I guess I just associated them with the stress of college. I've had the headache's ever since. Sometimes they don't come on for a few days but when they come they can last for up to 4 days.

I've tried excedrin, advil, tylenol, aleve... The only thing that really helps is Excedrin PM and a nice long sleep. However, even then I might still wake up with it.

In the end, I can get out of bed on my own, and participate in life in a way I couldn't when I was diagnosed at 16, so I'll stay on the Humira. But even as we speak I'm searching out the pills and looking for a dark corner to pass out in.

Best of luck to you all.

[rymac]

I have taken adulimumab and then enbrel and both give me  headaches, after years of suffering I take sumatriptan 50 mg  these can releive symptoms whithin 30 minutes

[sjbob]

I have been on Enbrel since Jan 2005.  For me it has been the most effective treatment for psoriatic arthritus by far.  Although I have a prescription for (2) 25mg injections each week I usually take 1 every 5 or 6 days - sometimes longer. But usually by then my P.A. starts acting up - I can feel it in my joints, etc.  My main reasons for the delay are first that I don't like the idea of injections - I do fear long term side effects, and second, because of the headaches.  I never had regular headaches before taking enbrel.  But I have been diagnosed with migraines.  They are not always severe but headache pain is just awful.  I have used tylenol, advil, caffeine (coffee), and Butalbital (by prescription), with varying results.  I avoid taking them if possible but when the pain is severe I must.  It usually is on the right side of my head. Sometimes pulsing.  They seem to come on a day or so after a shot.  I want to ask the doc about the injections: Is it possible that I could occasionally inject straight into a vein?  I try not to but sometimes there's a bit of blood.  Don't know if there's a relationship with the headaches..  but searching for answers.  I know that a glass of red wine can trigger it for me now -which is a shame because I like red wine.  But it also helps to eat if you are drinking.  When I have a headache I do not find that rest is always the best thing.  Although it is hard to do I will try to do excerecises like tai chi or yoga - good stretches with deep breathing. Also moderately long walks.  Doesn't always help but sometimes it does.   Whenever possible i prefer a non-medicated solution so I tend to try those first.  
Best of luck to all!

[joecardio]

Holy Moly,
I thought I was the only one going through this. I was put on Humira last year for a 6 month trial for my Crohn's Disease. It worked great for my Crohn's, but after being on it for 6 months, I suddenly developed a Severe Chronic Daily Headache problem. The pain manifests itself over my brow, and raidiates back to the base of my neck. There is pressure as well, as though my head is in a vise. I never used to get headaches, at all, but  am now living with these debilitating headaches. I too am unable to concentrate, lose focus, and now am off work indefinitely. I am a teacher so I just can't cope with the pain and a class. So far nothing works for the pain, other than Oxycodone, but that too causes a rebound headache, let alone the addiction factor. I am now going back on the Humira for my Crohn's, and hope they don't get any worse. I was kind f hoping the Humira may have a therapeutic affect on the pain, but after reading your enlightening info, I highly doubt it. Take care, All.