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Mania after infliximab?!

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Posted 2/17/2009 12:46 PM (GMT 0)
I've been semi-flaring lately (random way of putting it I know...as in I can still live my life fine and only have symptoms late at night/early morning but the severity changes and blood results are up and down so not really sure whats going on) had some more bloods taken this morning to check absolutely everything and I'm seeing my specialist next week and am booked in for an infliximab infusion but they've said I can change my mind on it if I'm really feeling brilliant and bloods are good.

Basically whenever I have an infliximab for about 2 weeks after I am high as a kite. Like wide-eyed, manic looking, hyperactive, insomniac type high. I'll sleep for about 2 or 3 hours very lightly and still be a twitching bundle of energy for the following day and night. And in the past thats when I've been totally zapped of energy for weeks beforehand so being relatively bright and perky now I hate to imagine how much I'll be bouncing off the walls if I go through with the infusion next week. I've tried OTC sleep aids (like Nytol etc) and prescription sleeping pills (zopitron) neither of which worked and I get driven to the point of near insanity!! (let alone my poor family who have to put up with it too, none of them could look me eye in the properly as I looked crazy lol)

Just wondering if anyone else gets manic like this after infliximab or if you have any ideas of anything I could request from the doctor to calm me down and also to help me sleep? I know hyperactivity may not seem like that big a deal but it really does frustrate me a lot especially as it goes on for so long!

Posted 2/17/2009 2:26 PM (GMT 0)
I never had that prob when I was on infliximab but do when Im put on high doses of prednisone and my GI prescribes me some stilnox sleeping pills when Im like that. They have helped me although the less drugs we take the better. Perhaps others have had that problem on infliximab and Im sure they will give you their imput. Take care hope you get a good night sleep soon
Posted 2/17/2009 6:09 PM (GMT 0)
lilcrohnie, have you told your GI about this?
Makes me a little nervous that its some kind of allergic reaction because I am allergic to codeine and while it makes most people down it wires me out bad! Like you're saying, cant sleep, cant stop bouncing off the wall when a day before taking it I was in agony.. Yea.. I dont know if it is even relateable but I think you should talk to your doc and see what he says!
I take remicade and find myself so weak and tired afterward, the total opposite of your reaction. I can't even handle cooking or doing much my infusion day as I pass out sitting up a lot n stuff.
I take this stuff called Ambien in the hospital to sleep and it knocks me out but I can't remember anything from when I take it til it wears off hahaha I guess it hits me hard! I've also used over the counter stuff (im in the US) and I think it was called Unisom max strength. I didnt care for tylenol pm as it did nothing for me.
Hope you find the cause of this mania and are able to get this new flare calmed down! Best of luck with the blood results.
Posted 2/17/2009 10:08 PM (GMT 0)
shakehead No, can I have some.....? eyes
Posted 2/17/2009 10:45 PM (GMT 0)
I just started Humira about 2 weeks ago, and I'm having a skin allergic reaction - broke out in a rash all over my body. It's mostly gone away, but my face and ears look sunburned... My ears ITCH like a crazy bad sunburn, and it's making me very jumpy.... Sounds similar to your hyperactivity... I'm hoping it'll wane soon. Benadryl (as my GI suggested) seems to be doing nothing....
Posted 2/18/2009 12:22 AM (GMT 0)
Hi Jsk218,

Welcome to the Forum! Have you taken another Humira dose?? I really would see/talk to your GI first. Four days after my first dose of Humira, I developed hives all over my body -- except my head, strange, but I am thankful to not have had hives on my face. My Doctor sent me to an Allergist and she said I was allergic. She called the Abbort company and they said Humira is a time-release drug that stays in your body 10 - 20 days. She gave me a steriod pack which helped but the hives kept trying to break through until day 14. So until it leaves your system, you will probably have symptoms. No more Humira for me. My GI doc said it wasn't worth risking another dose because I am also allergic to Remicade (the two drugs are related).

Please be careful with this and talk to your doctor. Take care.
Posted 2/18/2009 10:28 PM (GMT 0)
Ugh blood reults came back and my CRP has shot back up to over 100 plus I'm anaemic, looks like I will definitely be having the infliximab next week sad   I just hope next weeks infusion works better, it used to work a miracle! And as an episodic user can't help but get a major worry of reactions, I know I'll spend the whole infusion bricking it! Hopefully switching to methotrexate injections will give it the boost it needs to keep the darn CRP down and more importantly the D away lol
Posted 2/19/2009 11:48 AM (GMT 0)
"CRP has shot back up to over 100"
smhair Jings crivvens help m'boab ! I seem to remember there was another thread where someone was saying that they had one of 160 or something, everyone was comparing horror stories - I think you qualify to be added to that gallery. idea But on the plus side, you are getting your money's worth out of the NHS....here's hoping they have something left over after all my visits ! yeah
You've had methotrexate before ? It's got a very good reputation from what I hear, isn't that the one that is based on turmeric ?
On a serious note lil, I hope you are over the twitchy bit and getting some decent sleep. nono Very important for us immune-challenged folkies, don't y'know !
Posted 2/19/2009 4:27 PM (GMT 0)
It is strange isnt it how drugs affect different people in different ways, I started on imfliximab in Oct 2008, I was so excited, everyone I had spoken to at the hospital implied that it was a "miricle drug". I have found it helps me and my symtoms arent so bad. I am able to go to work and am only getting short temporay flare ups. However I do seem to be getting more colds and virus and when i do they last ages. Anyone else in my office who gets the same thing is better in a few days and I take about 2 weeks to get better. I suppose it is all about balancing one thing off against another. With meds for my crohns then i cant do anything or go anywhere. I react badly to steroids and became allergic to Azathiroprine (which is a shame because it did wonders for my crohns)
Posted 2/19/2009 6:15 PM (GMT 0)

Snohare - my CRP really bemuses me at the moment, when I was first diagnosed after being hospitalised it was over 180, over Christmas it was 163 and I was in screaming agony, but even though its over 100 now I feel better than I have when it was lower - maybe the last flare up has just made me ridiculously tolerant to pain and I should be screaming!! Ah now immunity to pain, thats a super power I'm sure we'd all love to have! lol!

I've been on methotrexate tablets for 6 years but I think I'm just not absorbing them properly anymore and apparently the injection is a much better way of getting it, worth a try anyway before going through that horrible process of trying new drugs and fiddling about til you get the right dosage....not fun days!

I'm also quite anti-meds unless they're absolutely necessary (hence episodic infliximab) I'm sure my bodys toxic enough as it is, luckily my docs know this too so will pretty much give me anything I ask for as they know how much I hate meds! Whereas some people I know struggle to get meds from their docs and get accused of all sorts!

littlemissmuffet - I also react badly to steroids, what they do to me mentally just puts my body in distress and makes everything worse, sorry about the azathiroprine, that must of been gutting as it did so well. Kind of how I feel about the infliximab, my first dose kept me in remission for 2 years, second dose in remission for 3 years, third only 6 months and fourth barely a month. I was absolutely devastated as infliximab was what I relied on and was my lifeline as it saved me from an ostomy when I was 16. But am praying that maybe just maybe this fifth one with a combination of injection methotrexate might be able to give me the relief it used to.

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