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

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 (migraine) 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 (migraines) 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.

[eeeeeelizab]

I am on humira for ankylosing spondylitis..It seems to be rare for women to be diagonosed with this disease...I'm glad to finally have found a rhematologist that listens! and does his job!!...my question...I'm extremely tired and have been prescribed adderall (adderrall) by my shrink for 2 years and it helps so much with fatigue 15mg 2x day.I Only take it when I'm working ! anyone have any advice on something else that would help with fatigue? more natural?...also have pea sized lump on hairline back of my neck?????    help any thoughts???

[carolanivey]

Hi,

Fatigue is part of the territory for AS, RA and its autoimmune cousins. The key is balancing exercise with adequate rest. Adderall (adderrall) is a stimulant which can interfere with your sleep, so make sure you don't take it late in the day or it'll keep you from getting good quality sleep. If you must take it later in the day, you need to consult with your psychiatrist about adjusting the amount or timing of the dose so you can rest at night.

It sounds old fashioned, but exercise (even us creakies can usually do some gentle exercise), warm milk at bed time, making sure your sleeping area is dark, cool and quiet. Or use a white noise generator if you're like me and need something to keep your monkey brain from letting you relax. (Ocean sounds, for example.)

Ask your doctor if it's safe for you to try a melatonin or valerian supplement. IMO, prescription sleeping pills are only a band aid, and they may force you to sleep, but it's not the kind of good quality sleep your body needs.

Also, sleep apnea can cause fatigue during the day. This often goes undiagnosed so it's worth at least asking about. Especially if your partner complains that you snore. :)

Good for you for  finding a rheumie who listens! They're like gold, aren't they? :) It's very important that your psychiatrist and your rheumie are aware of what the other is doing in the way of meds.

[gakelli]

So glad to find this site....I have AS and Chiari malformation (surgery in 01).....FINALLY diagnosed after my third child born and finally found rheumatologist that helped.....could NOT tolerate Humira due to horrible, horrible headache like I have never experienced, on Enbrel injections now for about 2 months....starting with these knifelike headached, from center towards back of right eye, was afraid it was from the Chiari malformation...but reading this helps to know not alone....like SmittyGirl wondering if it's worth staying on....definitely notice help with am stiffness and swelling but methotrexate already helping as well....were those of you on Enbrel immediantly affected?? I am trying to force myself to begin walking again, is helping some, but these headaches are really becoming worrisome on top of everthing else! Any suggestions???? Kelli from GA

[reek54]

I have been on Enbrel for many many years. I just had about a 8 month stint of remission where I thought my RA was in remission for good...not. Back on Enbrel. I have had a headache, lets say migraine for about month now. I will tell you it is from the enbrel and it will go away but it takes time. Is it worth the terrible pain...yes. Back when they came out with the premixed Enbrel I had the same problem. It is the best drug in the whole world but it is the cause of headaches in the beginning.

[Mylaney]

I am so happy to find this forum.  My husband has been taking Embrel for about two years and he had started having severe headaches and we thought it was migraines.  The doctor just switched him to Humira.  He took the first shot Thursday night and last night (Sunday night) he had such a bad headache that he threw up.  I'm not sure if it is a migraine or the Humira, but after reading all of these posts, I am starting to think it may have been the Embrel and Humira that are causing the headaches.  

[carolanivey]

I've also been on Enbrel for a couple years and sometimes get headaches. Not every time, though. Your husband might try drinking lots and lots of water the day before, day of, and day after his shot. This might help. I

A couple other things that have helped me are:

- not taking my methotrexate and enbrel on the same day
- switching to the self-mixed, powdered form, which doesn't contain preservative

[LR23]

What finally stopped the daily, throbbing headaches for me was switching from Humira to Remicade.  I hope you all find relief.

[Eli0830]

i have AS and i am sufering of burning pain on the nerves of my foot, the neurology doc. didn't find any problem, my question is does somebody with any R problem has have something similary? if so , has  enbrel helped for it?

[Tammy44444]

I have AS and have been taking Enbrel for 5 months.  I love it but am now experience lots of hair loss.  And not only that my hair feels dead and lifeless and I can't style it anymore.  Has anyone else experienced this?

[alexmelt]

Thank you so very much.  You have made me sane knowing that my pulsating over the left eye and left side of my face pain approximately two days after the Humira injection.  Lat night, my head felt horrible, somehow I was able to sleep after taking a Zyrtec and 3 (500)mg of Tylenol.  I have been on Humira for 18 months and it works according to my recent colonoscopy.  As one Nurse said, it's as good as long as you can tolerate the side effects.  The headaches are getting worse.  The MRI of the brain is clean with normal sinus flow.  So it has to be "just humira", just like my fatigue and low iron count.

You can rip me open, just don't screw with my head. hahaha.

Thank you so MUCH for saving me from insanity.

jeffrey