Please help! Hard Remicade questions

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Janel
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/12/2008 9:31 PM (GMT -7)   
Hi, All, and thank you for taking time to read this. I have ankylosing spondylitis (AS), a rheumatic disease that attacks the joints of the spine, forming it into a "bamboo spine" (no curves and fusion of all of the joints). The characteristic posture is noteworthy of Ed Sullivan, who crossed his arms that way to deter from the deformity.
 
My question is this: Does anyone suffer the day after Remicade infusion? I have had 5 treatments so far. The first two caused episodes, especially after a busy work period, of vision distortion, extreme fatigue, shortness of breath, rapid heart beat, my brain felt too tired to function/confusion, and then needing to "lay down before I fall down". After doing that for 1-2 hours and sleeping, I slowly felt better. I attributed this to getting used to the drug in my system and overworking myself past my energy limits. Otherwise, Remicade is working wonderfully with no problems past 2 weeks.
 
My last infusion, 3 days ago, was upped from 300 mg/500 mg (3 vials to 5 vials) due to a flare up involving my hands, which I need at work to do manual/soft tissue physical therapy. Next day-felt awful, drained, same symptoms but add nausea. Friday, same thing, no better. Worked too hard at work, then too hard at home and finally got to a bed and asleep by 9:00 p.m. and slept until 1:00 p.m. today. Today, same symtpoms only unable to stay up for more and than the time it takes to go to the bathroom or get a drink. Nausea with dry heaves, heart rate up in the 130s after five minutes, short of breath and I feel like I ran a marathon. I only feel normal laying in bed doing nothing.
 
Please, any similar reactions/experiences and how did you handle it?
 
Thanks, Janel  confused

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/12/2008 11:50 PM (GMT -7)   

Hi Janel,

I found infusions to be extremely tiring as well. They did get better over time. One other thing I did helped as well - I cut the benedryl they gave me down to 1/2. They were giving me 50mg of the stuff which knocked me down to feeling like a 2-ton brick where I couldn't get off the couch if my life depended upon it. But, I don't recall ever having some of the other symptoms you are describing - I stopped taking it almost 3 years ago, so my memory is failing me here....

Good luck to you. Have you discussed this with your doctor? What did he/she say? Remicade used to have a hotline you could call too - they took every call pretty seriously.

***


 


iMarzz
Regular Member


Date Joined Apr 2006
Total Posts : 103
   Posted 3/18/2008 6:48 PM (GMT -7)   
Had my first Remicade infusion last week and had a terrible headache and extreme fatigue for two days, buys I am hopeful this will work. Trying to wean down prednisone from 20mg every other day to 10mg every other day. So far I notice less tendinitis and less need for pain medications, except when I overdo it.

Mary in NJ

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 3/18/2008 8:16 PM (GMT -7)   
 Hi Mary!!
I don't take remicade, but just wanted to pop in and say hi, and that I hope you are doing well...have looked for you several times on the forum,  but didn't know how to contact you.  We've missed you here...how's everything going?
Hugs,
Jody

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 3/19/2008 2:37 AM (GMT -7)   
Hi Janel,
I haver been on Remicade for almost 5 years. Are you taking any pre-meds before your infusion? I usally nap during my infusion and I am fine after words. Don't over work yourself after your infusion.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/19/2008 5:01 AM (GMT -7)   
Hey everyone,
It was important for me to drop a little note saying "thank you" to all of you here. Tomorrow is my first Remicade infusion, and without this forum and reading all the input, supportive answers and all, I think I would be scared to death. Trust me, I'm still scared, but at least I have an idea of things that could happen, what to watch for etc..So I just wanted to say how grateful i am that you all are here. Joy
Count your Blessings, Joy
 
 RA :  Meds: Prednisone, mtx, Enbrel, (now changed to Humira)


iMarzz
Regular Member


Date Joined Apr 2006
Total Posts : 103
   Posted 3/19/2008 6:13 AM (GMT -7)   
OMG Jody!! I have missed you so much, my RA soulmate.

I was in the hospital in August for some bogus chest pain, work-up went well. After that I was either working (12 hr. night shift) or just too tired from working!

I think of you often and hope you are well. I will try to contact you by e-mail.

Mary

iMarzz
Regular Member


Date Joined Apr 2006
Total Posts : 103
   Posted 3/19/2008 6:16 AM (GMT -7)   
Kibbles

Good luck with you infusion. I have to admit I am feeling better already.

Mary in NJ

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 3/19/2008 7:06 AM (GMT -7)   
Joy, as I said before, I don't take remicade, but am praying your treatment goes well tomorrow...you are to be thanked yourself dear, you give as much support as you ever get!   I've read your posts before and you are a special lady.
Mary, so so glad you are back on, and that I saw your post!!  Please, do shoot me an e-mail, would love to catch up!
Hugs guys,
Jody

Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/26/2008 5:20 AM (GMT -7)   

Hey everybody, my first Remicade infussion went ok. They gave me a antihistamine prior,and something for my tummy and away we went. I was extremely tired for a couple of days, but other than that. okay. My hands,shoulders,and feet are still aching, but I would imagine the Remicade takes awhile to kick in huh? My next infussion is on the 6th of April.

Hope everyone is doing good.Joy


Count your Blessings, Joy
 
 RA :  Meds: Prednisone, mtx, Remicade


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 3/26/2008 6:03 AM (GMT -7)   
I've been on Remicade for ulcerative colitis for a little over two years. I do feel tired the day of and following day, but no other problems. I'm not sure how our dose compares with what you all get. For UC, it's 5 mg. per kilogram of body weight. At my infusion center they give Zyrtec before the infusion as fewer people get the tiredness/sleepiness from it than Benadryl. You might try substituting Zyrtec to see if that helps.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 3/26/2008 6:11 AM (GMT -7)   
Hi Judy, it was Zyrtec that they gave me too. I couldn't think of the name till you posted! Thanks! I had asked them about benadryl but they tend to use the Zyrtec more often. I don't know what it was they gave me for my tummy though, they just said so my stomach doesn't get upset. I ate a good lunch while I was there, and took a nap too. The chair wasn't really sleep quality though, if you know what i mean. At the cancer center where i work, the infussion chairs are great big over stuffed soft leather recliners, where I went for my infussion the chairs were boxy vinyl recliners that wouldn't even go all the way into a prone position, so I had to sleep sitting up.
Count your Blessings, Joy
 
 RA :  Meds: Prednisone, mtx, Remicade


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/27/2008 9:06 AM (GMT -7)   
Dear Janel,
I do hope you are feeling a bit better.  Do you take pre-meds?  Meaning benedryl & tylenol and a steroid before Remicade?
I dealt with similar symptoms & it was related to infusion reactions & serum sickness.  Also felt like the worst sunburn ever!  My doc has me take benedryl & then low dose prednisone 4 prior & 4 days post Remicade.
Worked like a charm.
Do talk to your doc about what you experienced.  Much can be avoided.
Best wishes.
erin 

Stanley Ipkiss
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 3/31/2008 9:40 AM (GMT -7)   
Both Zyrtec and Benadryl used to wipe me out for the entire afternoon and night. I switched to Claritin and it now seems better. Not sure what causes it, but heck! I'm willing to take the one day off every six weeks. I'm willing to work an extra Saturday or Sunday if need be.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 4/14/2008 9:13 AM (GMT -7)   
Good luck with the infusions.  Remicade often (not always) kicks in pretty quickly - I hope that goes for both of you.



 

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