Need Advice - Mystery Symptoms - Really Ill

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Regular Member

Date Joined Mar 2008
Total Posts : 54
   Posted 7/17/2008 9:11 PM (GMT -6)   
Hi: I have been on Remicade for over a year = Now on Highest Dose - Every 8 Weeks without anything else with it. Allergic to many things.

I know it binds to the TNF Cells but how long does it last in your system?

I have been ill and out of work for almost two months now after a simple Colonoscopy.

Really bad effects: 103 Temp for first couple days after and Severe Right side pain, rash, Skin problems - Upper Respitory infection - Fungal Infection taking two courses to treat - Severe Headaches -
White Stools - Severe Diarea- Severe Fatigue - a dead sensation in some of my muscles - Sinus Problems - Really poor appetite
I have dropped over 25 LBS. , Dizziness, cough, Sores you name it I am in pure helll probably now really depressed.

Is this the Remicade?

My next Remicade infusion was scheduled for July 23rd and I know before I had taken a test to see if I had developed antibodies but it
was a bad test because I still had Remicade in my system and that was at 10 weeks and before they upped my dose to the highest dose.

My GI referred me to the Gen Prac MD to work out the symptoms but he is asking if remicade can really last in your system that long
to cause these kinds of problems. I think I am reading from handouts that it does.

I am coming apart. It is really odd wondering about your career when you watch the TV and Gas Prices, Stock Market etc.
( I did hear we had a couple of good days) and you cannot get up. I am out of money tomorrow if I don't get a check it will be bad
My FMLA Salary Continuation was denied but is being re-reviewd. I think that only lasts three weeks?

Any advice would be greatley appreciated.

I should change my name to Crisis Girl for now. Thanks

Forum Moderator

Date Joined Nov 2003
Total Posts : 7055
   Posted 7/17/2008 11:19 PM (GMT -6)   
In another post you asked how long Remicade remained in the body. It does not last much over 6-8 weeks. BUT, if you have built antibodies to Remicade or have serum sickness from reacting to the protein, then you could still be ill. Also, many of your symptoms are similar to those that come from Remicade induced lupus. Have your doctor test ANA, anti-dsDNA antibodies, CRP, sed rate, C3 complement and do a HACA through Prometheus labs. The HACA is the only test to determine if you have developed antibodies to the murine protein in Remicade. Not all insurance companies pay for it.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 7/18/2008 7:06 PM (GMT -6)   
Hi Have you been in touch with your GI ? I got really sick with a severe cold after they doubled my Rem. and had to go off it. Maybe your Dr. can put you threw a quick course of pred. to get you over some of these problems. Be thinking of you hope you get better soon. Keep in touch. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 7/18/2008 7:35 PM (GMT -6)   
Hi LuckyStar. Wow you have really been thorugh a lot. I suggest your Doc call the maker of Remicade and discuss his questions with them. When I reacted to Humira, my Doc called them and got all the information she needed.

Hang in there! I'm praying it gets better for you ASAP and you get peace in your life -- physical, financial, and all else.
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