Remicade questions | Arthritis Information

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On a recent visit to a rheumatologist we discussed the possibility of trying Remicade again.  It was mentioned that there is a possibility that, since I used Remicade for about a year previously that I may have developed antibodies to it. 

Has anyone here gone off Remicade for a period of time and then gone back on it with good results?  From the research I have done this morning it doesn't look too promising as it seems to indicate that half the people that discontinue it and the re-try it have antibodies to it and have hypersensitivity reactions after infusion.
 
Bob
I was on it for about 4 -5 months. I had a reaction. I was on 9 vials, don't know the mg's. About 2 years later he put me on it again. This time he put me on 600 mg. But for the 1st hour only gave me 10 mg to see if I would react to it then give me the rest if not. At the end of that hour I had the reaction to 10 mg so he pulled me off. Hope that helps your question.[QUOTE=bob_h76] From the research I have done this morning it doesn't look too promising as it seems to indicate that half the people that discontinue it and the re-try it have antibodies to it and have hypersensitivity reactions after infusion.
 
Bob
[/QUOTE]
 
that would be a frightening aspect of attempting again. 
 
I hope you find something that works for you bob
 
 
I have been told that there is a greater chance of a reaction. I know my dr. said I could go back to Orencia if I didn't think Rituxen was the answer but they would premedicate before hand to prevent a reaction. But, they do that with the Rituxen anyway... I am assuming Remicade is similiar.

Good luck at your appointment tomorrow. Let us know how it goes.I don't think it's so frightening as much as it's discouraging.  I mean you're right there in the hospital and it's a hypersensitivity reaction so benadryl should take care of it pretty fast. 
 
r_a_reallysux: Do you mean that you had a reaction during your initial treatment and then again when it was tried again?  Or did you try it and have nothing then go back and have a reaction?  When I was on it, I took it for a while then had this flare.  My doc wasn't convinced that something else wasn't up so she told me to hold on the infusion.  I went at least a month past the date I was supposed to have it then she cleared me to take it and still never had a reaction after not having it for nearly 13 weeks.  Is this a good sign that I may not have a reaction?
 
Rebecca-  Did Orencia do anything at all for you when you started it?  I usually have a lower lymphocyte count anyway so I wonder if this is a suitable choice for me?
 
thanks all
Bob
 
Yeah, being on it for four to five months the first time, I had a reaction. Then about 2 years later we tried it again, and failed the first hour of that treatment. orencia has done nothing for me either. Nothing has. I think that will benefit me when i try for disability in a few months. benefit me that no treatment has worked.

Thanks.  That clears things up for me.  I was on remicade for about a year and never had a reaction to it once but then again I don't think it gave me any true benefit with the RA as well because I was on it when I went into the worst flare since I was a child.  Of course I was only on like 300mg dose.  I changed docs about that time too and the new one wanted to try upping the dose but I asked if I might try Humira instead.  Around that time, my pcp was worried about my high WBC count and advised me not to take the Humira because I obviously had an infection somewhere but he didn't know where.  After several antibiotics the count was still climbing.  He thought I had leukemia at one point.   I guess he didn't remember that when severe inflammation is present so is a high white count.  The oncologist however did know this. 

I'm sorry nothing is working for you and hope that something will soon.  I'll probably end up back on humira since it did seem to be giving some relief from symptoms.  I hope it works for me again.
bob
I have sarcoidosis and not ra as the doctors first thought.  However, I have had really good luck with remicade. The doc started me on a low dose but we increased it within 3 months.  I am currently getting 10vials every 4 weeks. I believe the maximum is 15vials every 4 weeks.  Your dose sounds very low.

I have heard about the antibody issue you are speaking of.  They do monitor you very closely but I have heard about some near fatal reactions so if you do decide to try it again, be sure to speak up immediately if something doesn't feel right.

I hope you find something to help you soon.  The steroids you're on seem to be making you pretty miserable and I can't imagine being on that high of a dose for much longer than you already have.  Good luck.

Trust me if I even sense something wrong, they are going to know fast.  But I've also read that the main reason why docs want to give MTX with Remicade is because it can help minimize the chance of antibody production.  I called the doc that wants to start it but his office is closed until monday.  They did however leave a number to call to page the rheumatologist on call for emergencies or patient questions.  He spoke with me for quite some time and told me that the percentage of people that do develop antibodies to remicade are around 10-20% which is a relatively small number.  I think I can at least give it a try.  

Oh gosh, I hope something works for me soon too.  I'm actually not all that bad really and could probably taper the pred back more and just suffer a little bit more.  I think it's worth a try and I'm starting down tomorrow.  I usually do 5mg every week or two.
 
Thanks to everyone for sharing with me.
Bob
After being on Humira for a year it had stopped working.I have been on remicade for a year now and the same thing is happening all over again.My psorisis has come back again and my rhumi wants to up dosage from every eight weeks to every six weeks.I hope this helps before the warm weather comes again. I seem to have problems in the winter with the cold dry air I guess.
 
Plauqe Psorisis & Psoriatic Arthitis
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