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Starting Infliximab Infusions on 23/5/17

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Asmaa

Hi! Have been diagnosed with Lupus & 2 years ago with Crohn's Disease. I'm on Imuran & Prednisone. Have been vomiting blood & have blood in my stool 😳 In essence, I had no idea that infliximab fell under chemo & I'd have to stay in the chemo day care room so can be observed for reactions etc. Can any or all of you tell me what to expect. Thanks
 
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Asmaa

My dr has not suggested that. He's right now in the USA & I start Infliximab first day he's back. How tough is Infliximab? Is it painful & what should I expect as far as side effects go?
 
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Tuff

It's not painful. I went for three years until it stopped working. You'll be sitting in a comfortable lounge chair with an IV in your arm for maybe 3 hours. A nurse stays with us the whole time. There's tv and snacks and drinks. My blood pressure would drop every time, but would go back up before I left. I was tired afterwards and would go home for a nap.
 
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Tuff

Infliximab has been reclassified as a chemotherapy drug because it requires special safety standards by the facilities that use it. Chemotherapy is basically any chemical therapy. It is also a Monoclonal Antibody, meaning it goes after a specific target, which differs from cancer chemo because from what I understand that cancer chemo attacks all the cells of the body. I have never had hair loss, nausea etc. that people on cancer chemo get.
 
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Echodog

It isn't chemo and is in no way similar to drugs that are used for Cheno. It has more to do with how it's administered no how it's billed. Because it's an infusion over a few hours, it makes sense that it would be administered in a place where other day patients receive an infusion that can take a few hours. Remicadee is a pretty amazing drug and was the first of the biologics (Humira, Entyvio, Stelara etc). It was a miracle for me when I got it. I was in the study and it worked and got me was a wonder drug. Unfortunately, after the trial ended, they refused to let me continue until it was approved by the FDA. At that point, I developed an allergic reaction and had to go off it. Humira gave me 5 good years although it took a solid 3-4 months to begin to see changes.
So, don't worry about the chemo ginkgo/ it is all about billing and not about the drug itself
 
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June Adams

Asmaa I was on infliximab for 2 years and at the start it literally gave me my life back. it is also a drug given to help rheumatoid arthritis, a side effect of it being it helps crohns. Unfortunately it gave me the arthritis to the point I couldn't leave the house. I was taken off it and given Humira on it 4years. Don't need any now. Humira is a subcutaneous injection you do yourself. Helped me greatly. No you don't lose your hair with infliximab, you just feel well. Good luck.x
 
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Echodog

It doesn't make your hair fall out. Chemo causes your hair to fall out because it is destroying the cancer cells in your body. At the same time it kills lots of other cels in your body. Your blood counts become so low that you no longer have the vitamins or minerals to support healthy hair. Chemo does a whole lot more than that. Besides Crohn's which I was diagnosed with at age 6, I was diagnosed with Leukemia (AML) at 13. The 2 have nothing to do with each other. There are some drugs that are used for chemo like methotrexate but the amount we use for Crohns is in a syringe. For Cancer the amount used is the equivalent of a 40 gallon drum. The biologics are miracle drugs when they work. Take all the possible side effects with a grain of salt. Hopefully you trust your doctor. If you do, you should believe that they are thinking of your best interest and wouldn't put you on anything with such brutal side effects without a huge warning.
 
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Asmaa

Thanks for clearing it up😊 I've had my first infusion & I started feeling pressure on my chest & felt very hot. This was about 2 :40 hours into the infusion. They had given me antihistamines & a some pain killer. After it was over, I felt v flushed & kept going to the bathroom. I felt extremely fatigued, however, couldn't sleep at all. It's my second day today & the air conditioner is on v cool . By the way I just want to have cold food, like fresh watermelon frozen juice. Any advice on what to eat? Thank you all for your support. Stay healthy
 
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Deleted member 431298

Guest
Any advice on what to eat?
I have found huge improvement with a semi-vegetarien diet of non-processed and organic foods. The GAPS diet or IBD-AID diet (Google knows them :)) are good places to start.
During the last three month I have noticed some improvement going totally dairy free because of the mounting evicence that the MAP bacteria in dairy herds cause / trigger at least some of cases of Crohn's. (see my other posts at this forum)
 
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paddywack

Asmaa said:
Thanks! Really appreciate your input. What about hair? Does it fall off? Wishing you health.
Click to expand...
I've been on Remicade for about 20 months. No hair loss, beyond normal hair fall. At least not for me.

I find that I have a tendency towards migraines the few days after the infusion, and I usually go home and nap afterwards.

But Imuran gave me pancreatitis and a hospital stay, so I believe I prefer the Remicade. For now.

I've started getting joint pain, so we'll see what happens next. Always seems to be something.

Good luck with your infusion! My infusion center has a blanket warmer. :dusty:
 
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