Headaches and remicade

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*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 4:59 PM (GMT -7)   
Hi guys

I had a remicade infusion this last Tuesday (a week ago tomorrow) and since Thursday I have had a headache that just won’t quit. Sometimes it’s very strong and hurts (affected a lot by sunlight or when I stand up suddenly, bend down etc) and at other times it’s a lighter, lingering pressure headache – but its irritating and is making my head feel very foggy.

I am going to see a GP about it tomorrow after work, but just wondering, has anyone had a similar experience? It’s horrible to not know what’s going on in there. I used to get very bad migraines but they were different to this, I would have the visual auras etc etc. I had an MRI done a year or 2 back because I was getting migraines 4-5 times a week at times, and everything came up fine.

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 5/9/2010 5:31 PM (GMT -7)   
This is from clinical pharmacology for infliximab (aka remicade) (what doctors use to look up side effect profiles):


In general, the types and frequencies of adverse reactions observed were similar in infliximab-treated patients with rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, or Crohn's disease. Of 1129 patients who had at least 4 infliximab infusions for rheumatoid arthritis, 21% had nausea (vomiting also occurred), 18% had headache, 12% had diarrhea, 12% had abdominal pain, 12% had cough, 10% had dyspepsia, 9% had fatigue, 8% had arthralgia, and 8% had back pain. A higher proportion of adverse reactions has been reported in rheumatoid arthritis patients receiving 10 mg/kg than 3 mg/kg; however, no differences in adverse events have been noted in Crohn's disease patients receiving a 5 or 10 mg/kg/dose. Post-marketing reports of interstitial lung disease including pulmonary fibrosis, interstitial pneumonitis, and very rare rapidly progressive disease have been received.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 6:07 PM (GMT -7)   
That’s really interesting, thanks for posting. Perhaps I should give my nurse a call (she’s my specialist’s assistant) and mention the headaches, and ask if this is a relatively common thing….

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 5/9/2010 6:19 PM (GMT -7)   
Headaches are also a side effect of Cimzia, and I've had them much more commonly since starting that drug. For me, they don't get worse than moderate but often last most of the day.
Cimzia, Asacol


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 6:20 PM (GMT -7)   
So you mean your headaches only last a day? Mine's been on-and-off but pretty constant since last Thursday (which was 2 days after my infusion)

redone
New Member


Date Joined Nov 2009
Total Posts : 19
   Posted 5/9/2010 6:31 PM (GMT -7)   
I get headaches after my infusions, normally hits me a couple days after and lasts a couple of weeks (off and on..but really bad migraine type of headaches). It's happened the last 2 times I was infused. I have had 4 treatments, I go for #5 at the end of the month.
37 y/o female.
Diagnosed in 2001
Started Remicade on December 3, 2009


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 6:37 PM (GMT -7)   
That’s interesting, Redone – I’ve lost count of how many infusions I’ve had, but I started Oct last yr and built up to 8-weekly infusions, so I’ve probably had 4 or 5. I’m glad I’m not the only one who gets these side-effects; I was worried for a moment there.

I will still mention it when I speak to the nurse – just to see if she has heard of it before and if I should do anything about it. I am hesitant to take NSAIDS because they are supposed to be bad for Crohn’s so most of the time I don’t treat the pain. The headaches are horrible, they really knock m e out and make me feel tired all the time, they’re similar to a migraine-headache in that they feel like a pressure on my head and it feels like it’s affecting the circulation.

Will be interesting to see if this happens the next time I get infused, too.

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 5/9/2010 6:38 PM (GMT -7)   
*Phoebe* said...
So you mean your headaches only last a day? Mine's been on-and-off but pretty constant since last Thursday (which was 2 days after my infusion)

Usually my headaches start off stronger in the morning and taper off over the day.
Cimzia, Asacol


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 6:40 PM (GMT -7)   
Mine were doing that some days too – but then getting bad again during the afternoon-evening…

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 5/9/2010 7:04 PM (GMT -7)   
If your GP has any helpful advice please let me know. I saw mine a week ago. He wondered why I was taking so much tylenol (2-4 tabs/day) and I told him because of headaches I suspect are a side effect of Cimzia, plus GI pain/discomfort. He didn't have anything else to say on that. I've started exercising regularly again over the past couple of months and think my headaches have gotten milder (lower blood pressure surely helps), but as I type this this evening I have a mild headache. I see my GE in a month and will ask him.
Cimzia, Asacol


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/9/2010 7:10 PM (GMT -7)   
I’ll definitely let you know. I’m going to call my specialist’s nurse today or tomorrow and just mention it, see what she says…..

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/13/2010 5:39 PM (GMT -7)   
Jusn an update - called the nurse and left a message but she didn't get back to me, so I called her again this morning and she is going to talk to my specialist soon, hopefully today, and give me a call back.... she said that off the top of her head, she doesn't recall headaches being a common side-effect of remi. It could also be a cold/flu/virus that I am suffering from (sinus perhaps?) We will see...

Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 5/13/2010 7:23 PM (GMT -7)   
I get a headache during the infusion. but thats it.
Remicade 6mp monthly b12.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/13/2010 7:36 PM (GMT -7)   
yeah I'm hoping maybe it's just a cold or something.....

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/13/2010 10:46 PM (GMT -7)   
My specialist has suggested that I might want to have my eyes checked.

I hadn’t even thought of that! I’ve never worn glasses before….. guess I’ll wait and see if it improves at all.

V. Susie
New Member


Date Joined Sep 2008
Total Posts : 11
   Posted 6/18/2010 8:05 PM (GMT -7)   
My 16 year old son, who's on Remicade for Crohn's disease, started suffering from terrible headaches about two weeks after each Remicade treatment.  These headaches would be off and on for about two weeks.  Our GI suggested  taking Benedryl at bedtime beginning a few days before we expected the headaches to begin and continue for 2 weeeks or so.  It really seems to help. 

leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 6/18/2010 8:24 PM (GMT -7)   
I had a headache for almost 4 days after my first Remicade infusion. Tylenol helped, but man, it was aggravating. It did finally go away though.

I mentioned it to my GI and he said it was pretty common. :(
30/f
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Remicade - 1 infusion so far
Darvocet or Lortab as needed for pain


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/18/2010 8:30 PM (GMT -7)   
I've been having the same problem had a checkup with the GP and I have high BP which could also be contributing to the migraines. But yeah they are migraines... uhhh painful
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 6/21/2010 9:59 PM (GMT -7)   
How's everybody's headaches? I still get them most days. They're mainly irritating more than anything. Tylenol usually only partially blocks them.
Cimzia, Asacol


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/21/2010 10:22 PM (GMT -7)   
i've had 3 infusions...no headaches to report.
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 6/22/2010 1:35 PM (GMT -7)   
I actually had my second infusion of Remicade yesterday and so far - knock on wood - I'm headache free.
30/f
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Remicade - 1 infusion so far
Darvocet or Lortab as needed for pain

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