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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.
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547368 tn?1440541785
Welcome Sally,

This thread originated about eight years ago - and "belongs" to someone else. We welcome your questions and concerns - but often posting on old threads does not receive many responses or visibility.

Please begin your own thread/question. Just click on the green "Post a Question" in the banner near the top of the page.

I'll watch for your new post.

Thanks,
~Tuck

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Avatar universal
I have been on Enbrel for six months now. I have gained a fair bit of weight quite fast. I also seem to have a swollen neck at the front, it doesn't affect my breathing but it is quite uncomfortable when laying down at night. I continually have headaches and sinus infections. I am not sure if I should request going off it. I was on humira for a period of time and lost over 50% of my hair within two months. I do not like these medicines and the side affects. Has anyone else experienced any of these side affects?
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Avatar universal
I am researching headaches with Humira and you have explained exactly how I feel.  Have you had any follow-ups with a doctor regarding this?  I have an appointment tomorrow with an ENT doctor who wants to do a CT Scan.  Any feedback would be appreciated.
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Avatar universal
Hello, I have AS and started on Remicade 3 or 4 months ago. I also take Sulfasalazine which helped me a ton.  Since starting Remicade my headaches have become worse after each infusion.  Rheum is going to discontinue the Remicade and discuss the other options mentioned in posts.  After reading these posts, I am not hopeful there is a med without headaches.  The Remicade has also made my diabetes harder to control.  I may choose to stop the Remicade and just stay on Sulfasalazine alone, longer if I can.  The AS was progressing to other areas which is why Rheum added the Remicade.  Good luck to you.  There must be some patients out there who do not get the headaches.
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Avatar universal
Hi! I have been on enbrel for 3 years and I have had sinusitis constantly over the 3 years. I had a septoplasty and rhinoplasty (sinus operations) in the last 3 years also and it has not done anything to help my sinusitis. I take enbrel once a week and sometimes my sinusitis lasts a few weeks before going away, only to come back maybe two weeks later.
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Avatar universal
I have been suffering with terrible migraines for about the last three years.  I have been taking Humira for about 7 years now.  After having done quite a bit of my own research now, I'm seriously considering #1 requesting an MRI and then #2 requesting to switch back to Remicade.  As bad as it was to have to go to an infusion center, and as great as it is to be able to give myself a shot at home, if I can avoid the terrible migraines that I believe Humira is giving me, I will do anything.  
TrumpyRN, I totally know what you mean about the ER nurses looking at you like you are a drug seeker.  I seem to have my migraines "get away from me" about every 3 months to the point where I can't get enough of my medicine I have at home safely in me to get my headache under control and I have to go to the ER.  When I report to them what I have taken, they look at me all CRAZY.  It is the most terrible feeling ever.  The only redeeming thing is when they see the unbearable amount of pain that I am obviously in when they see my blood pressure, they actually respond.  
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Avatar universal
I too have been on Enbrel which caused headaches. My rheumatologist said....oh no, it's not from the enbrel. Well anyway he switched me to Humira and guess what? I had such a horrible migraine that lasted five days and had sent me to the ER twice. It felt like the top of my head on the left side was going to explode and it extended to my left eye! I was also extremely nauseated and had the dry heaves which by the way only made the headache that much worse. When I tried to tell the ER docs that it was from the humira, they looked at me like I had two heads. No w mind you I am a veteran ER nurse and have been for 20 years. The other problem I ran into is that they looked at me like I was a drug seeker. I guess because of the medications I'm prescribed for the RA pain. I hope to God they never come down with RA and if they do I hope they never get a headache like I had. And if they do I do hope that they are treated as poorly as I was!!!
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Avatar universal
Hi, I'm currently on Enbrel for RA and suffering constant headaches (behind my eyes) and sinus issues (as well as frequent sinus infections). Have already seen a Neurologist who just threw more meds at me... now seeing an ENT surgeon to try to get to the bottom of the sinus issues. Has anyone here had sinus surgery? If so, did it help with the sinus issues?
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Avatar universal
Hi, I just had the same problem you mentioned with sudden deafness in one ear. Did it ever get better? I have taken Enbrel for the last 6 months.
Ralph
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Avatar universal
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
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Avatar universal
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?
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1723975 tn?1309987899
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?
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Avatar universal
What finally stopped the daily, throbbing headaches for me was switching from Humira to Remicade.  I hope you all find relief.
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1193998 tn?1265117597
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
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Avatar universal

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.  
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Avatar universal
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.
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Avatar universal
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
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1193998 tn?1265117597
Hi,

Fatigue is part of the territory for AS, RA and its autoimmune cousins. The key is balancing exercise with adequate rest. Adderall 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.
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Avatar universal
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 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???
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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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
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Avatar universal
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.
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394687 tn?1290920840
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
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