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Fatigue between Infusions

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Posted 11/7/2012 1:06 PM (GMT -5)
Hello All.

I am wondering if any Remicade recipients experience severe fatigue shortly before their next infusion of Remicade? I receive my infusions every 8 weeks and notice that, between 1-2 weeks before my next infusion, I am feeling severe fatigue (blurred sight, exhaustion, irritability, etc.). Does anyone else experience this? Yes, I am a little tired the afternoon of my morning infusion, but then I feel great and experience what I guess is a sort of remission. What does a remission actually feel like?

Any and all feedback is more than welcome!! Thank you. yeah
Posted 11/7/2012 1:16 PM (GMT -5)
You forgot memory, and yes you get to know when the stuff wears off. I took it for over a year, told the scheduler every 7 weeks because it wore off and they did. No questions asked.

I met several people that experienced the memory loss. varies with everybody. I work Nights so the infusions were done by noon, by 2PM i was out like a light in bed, when I got up to go to work I felt good.

Better Living Through Chemistry

T
Posted 11/7/2012 1:24 PM (GMT -5)
Hi T!

Thank you for responding and, YES!, I FORGOT to mention the memory loss! Pun intended (LOL)! Were you advised that this was a possibility? Should I ask about more frequent infusions? Needless to say, I hate to complain, as the infusions do help the rest of the time, however, it is really frustrating and disconcerting to crash so dramatically at this point in the infusion process. Even the simplest words escape my mind and, when I am trying to work, it is annoying to have to squint so much (chuckle).

Any suggestions on countermeasures? Caffeine doesn't help all that much at this stage, I'm afraid.
Posted 11/7/2012 9:34 PM (GMT -5)
I get remicade every 6 weeks and at a higher dose.  Around 4wks post infusion I start to get extremely tired and irritable.  My bm's increase also.  I also start to run fever and my lip and cheek starts to swell.  I know exactly what you're talking about.  I have no idea what remission is but I sure wish I could find out.  :-)    Best of luck to you.
Posted 11/7/2012 10:17 PM (GMT -5)
Don't ask, Tell them 6 o 7 weeks everyone is a little different. Yes the sight thing, I deal with very small measurements. Think as small as the thickness of a sheet of 20# paper. Can you see the fuzz on a cut sheet of paper on the edges? I can't in regular light anymore. And yes I take my glasses off to see that fine detail up close.
Your not complaining, think of it as tweaking your program.
We are all different and remember take no prisoners. Communicate and overcome.

T
Posted 11/8/2012 1:14 AM (GMT -5)
How long have you guys been on remicade?
I was on it for a short 9 months :( it have me the longest remission yet, I never suffered the memory loss fortunately.
Me and my doctor are considering returning to remicade if I don't start to feel better without it! Honestly I want this to happen because I know what to expect but am worried about the costs!

I have to say remicade so far was my favourite medication, it really worked. I too began to feel a lag between infusions and sometimes I would be worn out for the following week n sometimes if get a rash for a week but not every time and it was definitely worth it!!

I have to say now, I've been off remicade for nearly 2 years and am on azathioprine and budesonide and I have more of a memory problem now! Haha!
Posted 11/8/2012 1:14 AM (GMT -5)
How long have you guys been on remicade?
I was on it for a short 9 months :( it have me the longest remission yet, I never suffered the memory loss fortunately.
Me and my doctor are considering returning to remicade if I don't start to feel better without it! Honestly I want this to happen because I know what to expect but am worried about the costs!

I have to say remicade so far was my favourite medication, it really worked. I too began to feel a lag between infusions and sometimes I would be worn out for the following week n sometimes if get a rash for a week but not every time and it was definitely worth it!!

I have to say now, I've been off remicade for nearly 2 years and am on azathioprine and budesonide and I have more of a memory problem now! Haha!
Posted 11/8/2012 7:42 AM (GMT -5)
I've been on remicade for 18 months.
Posted 11/8/2012 3:41 PM (GMT -5)
July 2011 to Aug 2012. 13 months and now I have to switch due to side effects/antibodies. It's not all that bad.currently last Remicade Aug 8 since then only 2 weeks of Entocort. do I hurt, getting Cimzia overnight tomorrow,fingers crossed. Nurse to show me how to self inject. may be some relief.

Novice there are programs that help with the cost from the drug company talk to your doctor. same for cimzia. and humaria.

Its a real shame not getting the Remicade the nurse gave out lottery tickets when you were done. I think there was only 2 occassions when i did not win something.:)
Posted 11/8/2012 8:14 PM (GMT -5)
Yes, there are cash payments in the form of a credit card that Remistart coordinates on behalf of Remicade. Just search online for RemiStart and you will be directed to a customer scare coordinator who will help you submit the paperwork to your GI, who will code it and give it back to you to send in. It is relatively painless and the rewards are quite substantial (often up to 80% of your coinsurance). Without this assistance, I would not be able to continue with Remicade. I've often asked why they don't just lower the price of the medicine, but have yet to have an answer that is comprehensive - I could just be an idiot, I'm not sure.

You will also need to check with your insurance carrier, as they have restrictions on who can administer and where you can go for the infusion. I had one carrier that allowed me to have a nurse come to my home and the cost was half as much. I'm currently with Regence Blue Cross of Oregon and they will not allow me to have home infusions unless I am categorized as "homebound", even though they will save $3000 or more on the payments they have to cover.....very curious and frustrating.
Posted 11/8/2012 8:15 PM (GMT -5)
BTW, I've been on Remicade for over a year now, and hope I don't have to change!
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