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Second Remicade Infusion--Status: Wrecked

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Posted 3/30/2018 9:59 AM (GMT -7)
Welp, I'm waiting on a call back from my GI that I'm assuming will say "No more Remicade for you."

Went to my second dosage, which was a bit delayed (3 weeks after first instead of 2 weeks). When I got home I basically developed every known Remicade side affect:

Extreme Fatigue
Sick feeling all over body/Anemic feelings
Head ache and sinus pain
Delirium/Malaise
Chills
Flushed feeling in face
acid reflux which made the chest cavity sore
and
jaw pain, which I still have, and is annoying because I can't open my mouth.

I remember his number 2 drug choice was going to be Imuran. Really great that the two go to drugs to treat this disease medical science knows nothing about are a reject chemotherapy from the 1990s and an organ transplant drug that's even older.
Posted 3/30/2018 12:28 PM (GMT -7)
To be honest, I am not understanding why your dr did not order pre-meds if yu did this with the 1st infusion. I had a bad reaction on 3rd infusion. They stopped the drip, gave me IV soluable Medrol & Benadryl & waited a bit & resumed the infusion at a slower rate. From then on with pre-meds I never had a another problem. Not uncommon at all to be given pre-meds to ward off any potential reaction.

about Imuran; My gi added Imuran to all of his Remicade & Humira patients to help prevent developing antibodies. I have noticed that other members say the same thing.

I don't if your disease is considered moderate or what. If your disease is pretty active right now, Imuran alone probably will not cut it. It can take up to 3 months for it become completely effective.

I would discuss adding pre-meds at my next infusion before kicking Remicade to the curb. Not sure who told you Remicade is chemo, that is incorrect.
Posted 3/30/2018 2:48 PM (GMT -7)
1)I'm in remission since the diseased part of my bowel was removed.

2) I was pre-med'ed with Benadryl and Tylenol for both doses.

3) I'm going to request Humira--saw some studies showing infliximab allgeric patients often do fine with it. Plus not going to a chemo center all the time is a big benefit.

4) Dear god I do not want to do two reject chemotherapy drugs at the same time and skyrocket my risk of incurable lymphoma (though I understand that it's the best route that exists for many...)

5) Nurse I talked to today suggested we could try Remicade again with a round of steroids as pre-med, but Doctor will make a decision next week.
Posted 3/30/2018 4:24 PM (GMT -7)
I would recommend another try with a steroid pack. Solucortef might be one for you. This might be all you need to avoid the post infusion symptoms. Try not to get too worked up about the possible combination therapy your GI mentioned. It's very common, and you have to remember that the cancer risk in extremely small. Most of the bad effects from a lot of our meds are at considerably higher dosages which are used for other medical issues.
Posted 3/30/2018 7:32 PM (GMT -7)
Yeah I'll see what they think about doing another round with the steroids. I happen to have a very anti-steroids gi--he opted for resection for my bleeding bowel instead of steroids first because he said there was a lot of risk that the steroids would further damage the bowel creating more complications (my ulcerations were especially deep).

Update on symptoms: now in addition to my jaw, all of my fingers, my left leg at the hip and both arms are achey af. #miracledrug
Posted 3/31/2018 4:24 PM (GMT -7)
The steroids they give in the pre-meds aren't like taking Prednisone. Not in the same family.
Posted 4/2/2018 2:28 PM (GMT -7)
Update: No more Remicade. They don't want to risk an even more effed up reaction, they said. In fact, they aren't going to give me anything for the time being and are going to asses how serious they think my disease course is. I'm meeting with the GI team in 6 weeks. At 3 months post-resection (which I had last month) they are going to do a pill-cam and look for disease activity. Whether they see any will help determine what therapy they will put me on. Humira has been discussed. So, for now, I just enjoy surgical remission and hope nothing bad happens...

One thing my surgeon said last month that I absolutely do not believe is that 1/3 of Crohns patients who have a resection never have significant problems with Crohns ever again...that can't be real right?
Posted 4/2/2018 4:52 PM (GMT -7)
I had a reaction to Humira exactly as you described with Remicade. I had been on Remicade for 3 years, then switched to Humira. Had the reaction at 2.5 months. It was awful.
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