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Anyone have tips for horrific Humira headaches?

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Posted 3/5/2015 12:32 PM (GMT -5)
I take a Humira shot once/week and just started putting 2 + 2 together and I'm sure that Humira is giving me really hardcore heachaches, I take Tylenol but it barely if at all, helps with these headaches and since I have IBS mainly constipation, taking Tylenol just makes my guts worse constipation wise.

I'm really starting to lose it because I'm always suffering in some way for the most part and it's making life harder and harder and less and less appealing.

Any tips would be greatly appreciated thanks!
Posted 3/5/2015 12:43 PM (GMT -5)
I sometimes get constipated with my j-pouch and I take Miralax, it is mild and works pretty well for me. If the Tylenol works for your headaches then I'd focus on treating the constipation.

Are you taking any benadryl or another antihistamine to help prevent antibodies/reactions? If the headache is an reaction to the Humira then benadryl might prevent it.

Are you dehydrated? You could try increasing your water intake the day before your shot.
Posted 3/5/2015 12:53 PM (GMT -5)
Thanks for your reply Keith,

I drink a lot of water throughout the day and night daily and half a glass of prune juice and pear sauce everyday and still can't get the constipation resolved...I take Tylenol but it doesn't help these headaches at all, it works for regular headaches I got from time to time but not these Humira ones.

No, I'm not taking any benadryl or any other antihistamines either but thank you for the tip I will try that (I used to take antihistamines because others said they had some success with it aiding their IBD but I never found any difference) for these headaches though I will give them a shot.

Would one antihistamine a day be sufficient enough or should I take 2? And should I be taking them daily or just the day before and day of my shots?

Thanks again!
Posted 3/5/2015 12:58 PM (GMT -5)
I used to take them the day of my shot and the day after my shot, I did the same thing with Remicade. I was self-medicating but you could always ask your doctor or the humira help line for suggestions.

I would get really bad itching from Humira and benadryl would help with the itching.

How long do the headaches last for? And how soon do they start after your shot? If they only last for a few hours then maybe you want to schedule "the headaches" for the time that it is dark and you are sleeping.
Posted 3/5/2015 1:31 PM (GMT -5)
The headaches pretty much start within an hour or so after my shot, they have lasted up to 3 days after, fairly intense the entire 3 days, sometimes just 2 days.

The only time I feel excess itching is right after showering, I've always had fairly sensitive skin though so I didn't think much about any itching being related to my Humira shots...but since I take the shots once a week rather than every 2 weeks I'm not surprised that I have these headache issues or the itchy skin after showering...the skin itching goes away within an hour after showering, it's the headaches that are killer.

With having the IBS constipation, it's really painful passing BM's frequently in a day while I have these headaches especially because of all the straining and pushing I do it adds that much more pain and pressure in my head...I even started thinking it was all the pushing and straining on a daily basis that was causing the headaches, but I since noticed that the headaches arise shortly after I take my shot.

I will definitely start taking the antihistamine the days I'm scheduled to take my shot and for the following 3 days after to see if it aids.

Thanks Keith!
Posted 3/5/2015 2:47 PM (GMT -5)
that sounds unbearable. 3 headache days a week, every week. I'd ask the doctor and I would think about switching meds if they don't stop soon. I know that you are in Canada, did they approve Simponi yet?

Out of the 3 biologicals that I used (Remicade, Humira, and Simponi) and Remicade worked the best for me. I would go every 6 weeks for an infusion.
Posted 3/5/2015 3:19 PM (GMT -5)
Yes, lol on top of everything else it is unbearable to have a headache last 3 days straight in a row with basically no real break from the intensity.

I'm not sure if Simponi is in or approved in Canada yet, I won't be seeing my GI until May 11, if I'm still suffering with the headache issue then I will ask if I can drop back down to one shot every 2 weeks since my crohn's colitis actually went into remission before I asked him to up me to once a week (I was speaking with him as they wheeled me into the colonoscopy room at the end of last summer so he upped it for me then) a few weeks after I saw him for my scope results is when he told me my crohn's inflammation was all gone, just some scaring in the rectum and that IBS is what my issue was now and why I was still having frequency and other gut issues. So in actuality my crohn's went into remission on just biweekly shots...and I don't recall having these headaches biweekly.

Thanks so much for all of your input!
Posted 3/5/2015 4:24 PM (GMT -5)
PB4,

How about every 10 days so 3 times a month instead of 4 and then move to twice a month? Your body may have built up a tolerance to Humira since then so going back down to half of your current dose may no longer work...unless the headaches demand every 2 weeks.
Posted 3/5/2015 5:38 PM (GMT -5)
Thanks Keith,
I will talk to my GI about it and see what he suggests since I don't really know how it all works with biologics.

Thanks again for your very helpful input!
Posted 3/5/2015 6:46 PM (GMT -5)
pb4, have you had your iron levels checked lately??

i had been having a horrid headache daily for months and couldn't figure it out. my doctor FINALLY checked my iron stores and my level was a 3. my headaches have been less since i started infusions again.

if it's not iron related, i had bad migraines on remicade. i honestly never found a way to manage them but i was down for the count every 3 days after my infusion. had to be in a dark room with no lights. couldn't even lift my head off my pillow without wanting to vomit.
Posted 3/5/2015 7:53 PM (GMT -5)
OH bananagirl I'm sorry you've had to suffer through that as well. I believe they said my iron was just a little low, they never told me to take supplements for it so I haven't since I wouldn't know how much to take daily and because I've heard many times that iron supplements can be really hard on the gut and of course that's the last thing my poor gut needs.

I'm going to try what ks1095 said with the antihistamine and cross my fingers it'll work.

Last night my headache was so bad it brought me to tears, I'm just really struggling lately, so sick and tired of always feeling like crap one way or another, my guts, my head, my depression, my broken heart, the odd annoying pain in my arm, it just never ends...on top of life's daily bullcrap I'm just so overwhelmed with it all.
Posted 3/19/2015 12:28 AM (GMT -5)
One more question to Keith, should I be taking the antihistamine on the day of my shot only or should I be taking them everyday?

Thanks
Posted 3/19/2015 5:41 AM (GMT -5)
Maybe I am not understanding something. You said you got into remission on a shot every 2 weeks, but are now on a shot once a week because YOU asked to take it that often before you knew you were in remission. Is that correct? If so, why in the world are you continuing with a shot every week? You apparently didn't need it. That sounds like what the problem is ... you are getting too much medication. Is there anyway to contact your dr before your appt in May? I don't know how it works in Canada, but I can email my dr at any time and he or his office gets back to me within 24 hours. If you can't contact him, maybe contact Humira or just try want ks suggested about stretching the time between shots. I don't know how biologics work, but slowly stretching the time between shots shouldn't do any harm and you will be able to see if anything changes right away. I hate to see you continue to suffer until May!

As for the constipation ... my dr told me one time that taking a half dose of Miralax a day is safe if I am bothered by constipation. Thankfully I only had to do that one time for about 1 week, but had no other problems.

Best wishes for you ... I hope you get some relief soon!
Posted 3/19/2015 10:04 AM (GMT -5)
Exactly correct CCinPA, I just called my GI's nurse a few days ago (Monday) and he's already booked out, she said he may pop in before he's gone on his actual trip but to stay on the dosage I'm currently at (she even read all the notes on my file to see if GI may have mentioned plans to drop me back down and she couldn't see anything written in that regard). There's still a chance I will hear back from his office hopefully soon. Though, I was getting headaches even before switching up to once/week, they just weren't as severe and didn't last so long.

I'm going to see a dietitian March 27 in regards to my IBS issues (and technically for my CD for if it flares again) so far I've managed to make the constipation somewhat easier with adding the metamucil fiber pills back into my routine and sticking with prune juice daily as well as a teaspoon of extra virgin olive oil, this combination seems to help make it easier to pass BM's, but I'm pretty annoyed that I still have frequency issues and it's so weird cuz I really don't eat a whole lot in a day, my meals are generally snack sized portions about 4 times a day rather than 3 large meals.

Thanks for your support and best wishes, it really helps :)
Posted 3/17/2020 9:25 PM (GMT -5)
How long did it take until headaches went away for those of you who stopped Humira? I read the drug takes 3 months to completely leave your body. I'm one month out and still getting migraines/almost daily headaches lately.
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