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Crohn's Disease Forum » Treatment » Remicade/Infliximab » First remicade infusion-massive migraine


10-24-2013, 05:21 PM   #1
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
First remicade infusion-massive migraine

Hello everyone. On Monday I received my first remicade infusion. I was on humira prior and it was not helping me. Anyways about 2 hours after the infusion i began to have a slight headache. I thought it could of been from the large dose of Benadryl they gave me prior to the infusion. So I ended up taking 2 extra strength Tylenol. It did nothing. I could not sleep that night due to the constant throbbing in my temple area. It just progressed and I ended up taking 800 ibuprofen. Nothing. By the next morning I was in agony and called my GI dr. He told me he would prescribe me a migraine med but in the meantime take a morphine sulfate pill he had previously prescribed me for the joint pain I was experiencing 2 weeks prior which I know now the humira was enhancing that. But anyways, I took the morphine pill and it did absolutley nothing. By 7 pm my head was going to explode and I started shaking uncontrollably, severe nausea and fever. My husband rushed me to the ER where they took me in immediately. Blood pressure and pulse was sky high. Gave me dilaudid, steroids and fluids and sent me on my way. Dr called me today to check on me and tell me he was going to add another pre med to prevent a migraine the day of my next infusion.since all this I'm extremely fatigued,weak and my cheeks are very flushed and hot to the touch. My head feels funny? I'm just frustrated and want to feel better!! Anyone out there experiencing headaches /migraines
with remicade ?
10-24-2013, 07:54 PM   #2
AlliRuns
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I had a migraine after one infusion, I'm not sure if the infusion was the cause, or it was something else. I didn't get out of bed for 36 hours after. Maybe you will luck in and it was just a one time thing.
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Diagnosed Crohn's since November 2012

Current Medications: Remicade, Imuran, Cipro

Past Medications: Entocort, Prednisone, Flagyl/Cipro, Nexium, Omprazole, Pantoloc

10-24-2013, 08:03 PM   #3
peterdoats
 
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Hello everyone. On Monday I received my first remicade infusion. I was on humira prior and it was not helping me. Anyways about 2 hours after the infusion i began to have a slight headache. I thought it could of been from the large dose of Benadryl they gave me prior to the infusion. So I ended up taking 2 extra strength Tylenol. It did nothing. I could not sleep that night due to the constant throbbing in my temple area. It just progressed and I ended up taking 800 ibuprofen. Nothing. By the next morning I was in agony and called my GI dr. He told me he would prescribe me a migraine med but in the meantime take a morphine sulfate pill he had previously prescribed me for the joint pain I was experiencing 2 weeks prior which I know now the humira was enhancing that. But anyways, I took the morphine pill and it did absolutley nothing. By 7 pm my head was going to explode and I started shaking uncontrollably, severe nausea and fever. My husband rushed me to the ER where they took me in immediately. Blood pressure and pulse was sky high. Gave me dilaudid, steroids and fluids and sent me on my way. Dr called me today to check on me and tell me he was going to add another pre med to prevent a migraine the day of my next infusion.since all this I'm extremely fatigued,weak and my cheeks are very flushed and hot to the touch. My head feels funny? I'm just frustrated and want to feel better!! Anyone out there experiencing headaches /migraines
with remicade ?
I TO HADE THIS PROBLEM AT FIRST FOUND DEMERALL PAIN MED TOOK THE PAIN AWAY AND AFTER USEING REMACADE AFTER 3 OR 4 TREATMENTS NO MORE HEADACHES HOPE THIS HELPS BUT THE DEMERALL DID FOR ME PETE
10-24-2013, 08:27 PM   #4
rygon
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yeh I had a headache after my 1st couple. 15 infusions in and I dont have any problems with any adverse effects
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10-24-2013, 08:27 PM   #5
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Thanks for the replys. I pray it doesn't happen again and that the pre med helps. That was pure torture!!
10-25-2013, 08:09 AM   #6
jjk308
 
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As Remicade is developed on partly mouse antibodies you can have a reaction to it. I tried Remicade and though I didn't have a violent reaction to it I quickly developed a resistance, and after 3 infusions it started to make me feel worse, not better.
Luckily Humira, which is derived from solely human antibodies, was entering its final clinical trials and I started taking it with outstanding results.
10-25-2013, 08:18 AM   #7
Lisa
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I had a migrane out of the blue about 2-3 years ago now - it was a day or two after my infusion - although docs don't think it was related - bad enough to the point I almost woke my husband up to take me to the ER - but yes, I sucked it up (as I was hanging over the sink throwing up) because I didn't want to have to wake up our daughter and my Mom (would have had to drop daughter off @3am)....smartest move? NOPE - my headache finally started to lessen as I was hitting the point of going anyway...then I had a nagging headache for about a week after that.....went to the Dr, got headache meds which didn't really do anything.....

Haven't had one of those again, and really hope I don't!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
10-25-2013, 08:49 AM   #8
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Ugh!! They are so terrible. I hope whatever he gives me prevents it from happening again because if it happens again I'm done with the remicade. I've never in my life had a migraine that was so intense and long!! I can tolerate a headache but that migraine was unbearable.
11-01-2013, 10:04 AM   #9
{lisa}
 
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I too had migraines in the beginning and they started a day or two after treatment. But when I switched to a different infusion center, I mentioned the migraines to my nurse and she told me they can be caused when the meds are infused too quickly. She slowed down the infusion time and I no longer get migraines. Hopefully this helps someone out there!
11-01-2013, 10:08 AM   #10
yellowamc
 
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I am so sry ive been, I had the same problems on remicade.
11-01-2013, 06:17 PM   #11
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Monday will be my second dose. Talked to my doctor this week and he said he will be adding another premed before the infusion and that the drip rate would be slower. So I hope that fixes it.
11-06-2013, 07:13 PM   #12
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
It happened again I'm completely disgusted with everything right now. ;(
11-06-2013, 07:52 PM   #13
{lisa}
 
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Join Date: May 2011
Location: Milwaukee, Wisconsin
I'm so sorry!! That really sucks. Do you have migraine meds? I take Maxalt for mine because I can't take NSAIDS aspirin etc. and Tylenol never works. Maybe the doc could prescribe you something like that. I only take them when I start to get one. And it's not a narcotic either. I do hope you feel better soon!
11-06-2013, 08:48 PM   #14
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
Thank you so much Lisa. It was pure torture. He changed the drip rate and I got the pre and post meds and the migraine started the next morning. The first time it started 2 hours after the infusion. So there was some change but omg I can't keep going threw this every time it get a infusion. My husband called my GI and told him what was going on. He said this is not acceptable and NOW he's saying for my third infusion (which I'm dreading) he will give me pre meds, stop half way threw the infusion give me more meds, then post meds. All I know is if a migraine happens on the 3rd infusion I'm completely done. I've never in my life had such bad pain in my head like that. My brain felt like it was going to explode. He prescribed me morphine 15mg tablets. They did nothing!! He don't want me taking ibuprofen due to bleeding but I took a 800mg and another 3 hrs later and it finally subsided. I was so flushed, my skin was beaming red and hot hot hot to the touch. I'm glad I am able to finally get out of bed, but now I'm just severely fatigued from it all. I honestly feel so hopeless right now.
11-15-2013, 06:43 AM   #15
yellowamc
 
Join Date: Nov 2013

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have u asked your doc about cimzia, like I said I had same problem with remicade, and it actually stopped working for me. They had me up to double doses every two weeks. The ive I think was better than self injection, but the cimzia at least for me seems to be better on the headaches
11-15-2013, 09:18 AM   #16
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
I have not. But I def will if the same thing happens after the 3rd infusion. How long were you on the remicade ? Did it help you at first ?
11-15-2013, 10:02 AM   #17
yellowamc
 
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I have not. But I def will if the same thing happens after the 3rd infusion. How long were you on the remicade ? Did it help you at first ?
I was on it about six months at first it was great. But then it started fading out. My new gi doc thinks maybe it was just time for surgery for me, theoffice I was goin to let things get to far. They put me on cimzia rite before my surgery, and my new doc has kept me on it.
11-15-2013, 11:55 AM   #18
Mzjenny
 
Join Date: Apr 2012
Location: Rhode Island
I'm really hoping it helps me. I do not want surgery but then again who does. I hope the adjustment to the med helps with the migraines. What surgery did you have. Where was the location of your crohns if you don't mind me asking
04-13-2017, 02:17 PM   #19
Harout20
 
Join Date: Feb 2017
Location: California
I just started my first dose of Remicade. Oh boy! The infusion went smoothly. But today i woke up with a headache and its killing me. I too was on humira. Crap drug! fixed stomach but anxiety and internal tremors is the after effect
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