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First Remicade Infusion since I started methotrexate and I had a reaction: What next

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Ulcerative Colitis
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Posted 1/17/2013 8:38 PM (GMT 0)
So, I have been on remicade since July of 2009.  about four months ago they upped my remicade dose to 10kg every 8 weeks.  I started taking Methotrexate on Dec. 18th of 2012 and yesterday was my first infusion since taking this.  Well, when I got home, I looked in the mirror and my top lip and chin was all red and had read bumps on my cheek and some on my neck.  My throat was sore and my lips were swollen alittle bit.  The first time I had a remicade infusion I had a reaction of itching, chest pain, and shortness of breath.  They premedicate me and I take zyrtex and sinculair every night cause if I don't I itch like crazy(remicade I think).  So now my mom is kind of scared that when I take the methotrexate next tuesday or I have my next infusion I am going to have a worse reaction.  I don't know if it is the remicade or the methotrexate.  The remicade has always caused problems for me but not like this.  I called the doctor and am waiting for a call back.  What is next? She said the chances of Humira or Cimzia working are slim cause while the remicade helps my symptoms it doesn't get rid of my inflammation.  She said I obviously have inflammation coming from some where else besides where the TNF blockers block the inflammation.  That makes sense so she said it will probably work just like the remicade.  I still am thinking of trying it.  I just don't know where to draw the line.  I seem to be allergic to everything(asacol, lialdia(sp), imuran, and azathiaprine) she said there are some new organ transplant drugs in japan that have had good results but they won't be available here for at least a year or two. Also, what are all these drugs going to do to my body?  I am only 33 years old.  I know I will probably have to have surgery but I am scared of that also.  The remicade has helped my symptoms to a point so in my mind I am not bad enough to need surgery but I still have urgency and have to worry about going in my pants and if we plan on going somewhere I am stressed out.  When I think of this the surgery sounds good but what if I have surgery and find out I have crohn's(nothing has ever come back as crohn's) or I need a permanant bag(which alot of you have said isn't that bad) or what if my pouch gets infected then what do I go on, I am allergic to everything? Ugh sorry for the rambling I am just so sick of this and this stress ugh!!!!! I HATE UC.
Posted 1/17/2013 8:39 PM (GMT 0)
I'd get surgery, even if it meant ending up with a bag, if I were in your shoes.
Posted 1/17/2013 8:52 PM (GMT 0)
You know I am getting to that point.  I have an appointment in May with the GI dr and i was going to ask her for a refferal to the GI surgan so I can get a peace of mind and now all this happened.  Ugh
Posted 1/17/2013 9:20 PM (GMT 0)
I have had UC for almost 20 years. I am tired of having the pain, bloating and overall feeling like crap. My GI doctor said in 10 years I would need surgery, that was 2 years ago. How did you go about doing remicade? How did you bring it up to your doctor? Is it expensive? Do you have insurance. I've been taking Asocal for 19 years and believe it does nothing for me. I still have pain, bloating and bleeding. I would like to discuss remicade with my doctor.
Posted 1/17/2013 9:24 PM (GMT 0)
Have you ever done the triple antibiotic combo therapy? You can search it above. Also this year it looks like a couple new drugs are coming out for UC. I'm just suggestions these few things if you were set against surgery, but it looks like that may be an option to you. Have you ever had you stool tested for parasites? There's a company in AZ that does parasite testing exclusively. Have you ruled out a bacterial infection too? There's a comprehensive stool testing kit that will test, yeast, bacteria, parasites. I'm always trying to find the root cause and not so much what meds will help since they don't work so well for me.

Just a few thoughts.
Posted 1/17/2013 10:09 PM (GMT 0)
therearemiracles-I have had my stool tested numerous times and nothing has ever come of it.  They always come back negative.  I will look into antibiotic combo therapy, I have never tried it, and will ask her about it.  As far as these new drugs, I am so worried about all the side effects with these drugs.  Exspecially a trial drug.  It is bad enough I am on the remicade and methotrexate and I try not to stress about it but I do.  Also, when do I draw the line on how many of these "new" drugs I try.  I know if I was as bad as I was before I started the remicade I would have surgery in a heart beat.  I am slowly getting worse. 

kgruben7418-Ask you doctor about it.  I am suprised it hasn't been brought up to you.  Remicade is very exspensive.  I don't know the exact amount but I heard it was thousands of dollars an infusion.  Not sure though. You also have to get alot of blood work taken when on these drugs.  I have insurance but I know every year I will hit my $3,000 deductable.  If you don't have insurance I know there are financial programs through the hospital that will help you pay for the remicade.  You just have to call and ask for the financial department at the hospital or ask your GI.  There are also other biologic drugs out there you could try.  But if you are just on Asacol and that isn't working any more the next step would be drugs like azathioprine and imuran or 6mp then remicade, humira, cimzia, etc.  The doctors from my experience seem to work their way up the latter of drugs.  My aunts dad has had UC for 60yrs and has just been on Asacol that whole time and has been in remision with just that for 60 yrs.  I wish I was that lucky. lol

Posted 1/18/2013 2:52 AM (GMT 0)
I didnt get Remicade until I asked for it, I think because I didnt complain about my situation very much.
My doc's charge is about $8500 per infusion, which the insurance has negotiated down to $2500. My part of that causes me to always hit my out-of-pocket max each year, and after that I pay about $35, co-pay for the appointment.
I have my infusion in my doctor's office infusion center, which I believe is cheaper than a hospital infusion center.
Posted 1/18/2013 9:22 PM (GMT 0)
By chance I had a conversation recently with a female Crohn's colitis patient, likely in her mid-forties, who told me about problems she is suffering on Methotrexate/Remicade combo. She gets allergic reactions from her infusions, and now also from IV iron! She has been consulting with an IBD gastro who subspecializes in immunology; this guy advised her to get infused at the medical center's cancer unit because the staff there all have experience infusing patients on cancer chemotherapy, who tend to get the worst reactions. She took his advice & says it does make a difference seeing specialized infusion staff; still, she is understandably worried about what the UC immunosuppressants are doing to her body. Sorry to read that you have a similar reaction. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/18/2013 10:50 PM (GMT 0)
I still haven't heard back from the doctor. Usually they call back right away. So, I guess I will be call them on Monday.  I don't know if they aren't to conserned about it right now cause my next infusion isn't until March 13th but my mom is scared I will have a reaction on Tuesday night when I take the Methotrexate cause I have more Remicade in my system now. Ugh I am in the infusion area where they do all the infusions in the hospital.  They have actual rooms that the chemo patients are in.  The rest of us are in "curtain rooms" with tv's.  So, it is pretty private.  I didn't have a reaction this time until I got home like thirty minutes after the infusion but I think my face was all read  but I don't know.
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