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Crohn's Disease Forum » Your Story » Infliximab side effects


08-27-2017, 06:58 AM   #1
honey051162
 
Join Date: Dec 2016
Location: south shields, United Kingdom
Infliximab side effects

Hi All
Just to share my experience from the above drug, after 3 infusion I felt a burning sensation as It was being administered. I told the nurses and they said they hadn't heard of any side effects from other patients. I also informed them that I was experiencing hair loss, again they said they hadn't heard of it. I spoke to a senior pharmacist who agreed that these symptoms are from the drug.
I have now stopped the infusions after 4 treatments, since then I have had a severe reaction which after seeing a specialist they have diagnosed Psoriasis, find this hard as this drug is used to treat Psoriasis.
I have attached some pictures to show what could happen . But it isn't to say that you will get this but please make sure you have a care plan in place to cover any eventuality and keep a rescue pack of drugs available at home, i.e. antibiotics , steroids, creams etc.

If anyone needs more information about my experience please feel free to message me and I will try to inform you of the steps I've taken on my journey.

Good luck with your own treatments.

Last edited by honey051162; 08-27-2017 at 07:00 AM. Reason: uploding pictures
08-27-2017, 07:44 AM   #2
ronroush7
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Thanks. Wish you the best. Is the doctor putting you on another biologic?
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-27-2017, 07:57 AM   #3
honey051162
 
Join Date: Dec 2016
Location: south shields, United Kingdom
I am going to be refusing any further chemo treatment. I should be starting a new chemo in 2 weeks which I have been told may course worst side effects so no thank you I would rather suffer with the crohn's than the side effects at the moment I can not walk or use my hands I have not been able to work or cook and do general house hold chores for the last six weeks and I have lost feeling in several fingers and toes which is now turning blue, I would rather be sitting on the toilet and having a sore butt for a few hours a day than have no life at all lol
08-27-2017, 08:00 PM   #4
ahm
 
Join Date: Aug 2017
as far as I know not taking medicine will harm you and you may need surgery. I know you had bad experience with infliximab but please ask your doctor about humira, my doctor said it has lower side effects
08-29-2017, 09:34 AM   #5
Jnanabase
 
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Location: Clarksville, Indiana
I started Remicade a little over a year ago, and just here recently I've had terrible itching all over my body once I sit still... for example, I'm a line cook and I have no itching while I'm working, but once I relax at home after work I start itching all over. I use Benadryl to combat some of the histamine. I talked to my infusion nurse and she said I must be developing antibodies to the Remicade. I live in fear for Remicade's side effect list is HUGE. I want an all natural way to combat my disease.
08-29-2017, 09:51 AM   #6
ronroush7
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I started Remicade a little over a year ago, and just here recently I've had terrible itching all over my body once I sit still... for example, I'm a line cook and I have no itching while I'm working, but once I relax at home after work I start itching all over. I use Benadryl to combat some of the histamine. I talked to my infusion nurse and she said I must be developing antibodies to the Remicade. I live in fear for Remicade's side effect list is HUGE. I want an all natural way to combat my disease.
Praying for you.

08-29-2017, 10:00 AM   #7
Jnanabase
 
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Praying for you.
Thanks man, I appreciate it. I know my situation is fortunate compared to some. I've just always prided my immune system. It's kept me healthy my whole life. All these immunosuppressants scare me quite frankly...

08-29-2017, 05:53 PM   #8
mellie
 
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I'm with you, Jnanabase. I would really like to be able to treat myself naturally without drugs that suppress my immune system. I, like you, am not a typical "Chronie" and the worst of my experience were two fistulas that I couldn't get rid of for 7 years. I was referred to an amazing surgeon in February who got rid of them (Pleaseeeee don't come back). In May, I started to get a small, scaly rash around my nose and mouth that my gastro said was more than likely caused by taking Imuran. So, more creams and potions (I like him but every time I see him, he adds more meds). Well, in the last week, the manageable rash has gone blazing out of control and I'm typing from my bed with an ice pack on my face, having seen a dermatologist and my gp. They are opposing one another's advice....now on steroid cream to calm my face down and anti-fungals. I don't even want to go out in public, I look like a monster! My husband wants me to focus on diet and alternative treatments and, in theory, I agree. However, I feel like there is such a vast land of knowledge out there and what works for one may not work for another that it's hard to know what direction to take. I feel a bit like a top spinning out of control!
08-29-2017, 07:21 PM   #9
Jnanabase
 
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I'm with you, Jnanabase. I would really like to be able to treat myself naturally without drugs that suppress my immune system. I, like you, am not a typical "Chronie" and the worst of my experience were two fistulas that I couldn't get rid of for 7 years. I was referred to an amazing surgeon in February who got rid of them (Pleaseeeee don't come back). In May, I started to get a small, scaly rash around my nose and mouth that my gastro said was more than likely caused by taking Imuran. So, more creams and potions (I like him but every time I see him, he adds more meds). Well, in the last week, the manageable rash has gone blazing out of control and I'm typing from my bed with an ice pack on my face, having seen a dermatologist and my gp. They are opposing one another's advice....now on steroid cream to calm my face down and anti-fungals. I don't even want to go out in public, I look like a monster! My husband wants me to focus on diet and alternative treatments and, in theory, I agree. However, I feel like there is such a vast land of knowledge out there and what works for one may not work for another that it's hard to know what direction to take. I feel a bit like a top spinning out of control!
Mellie:
Oh I'm so sorry, I feel for you. I am in no way trying to convince anyone reading this to go away from "FDA Approved" or whatever.. treatments that are commonly prescribed in the U.S. and around the world, but I Googled "CBD oil and Crohn's Disease" and there has been extensive research and trials on mice, etc. There are many states here in America that Crohn's Disease is a qualifying medical condition for medical marijuana. The non-psychoactive Cannabidiol is ingested and comes into direct contact with intestinal inflammation and has reduced inflammation in mice through laboratory testing. I just think it would be worth a shot, and I definitely wouldn't be worrying about acquiring a terminal illness in the process of treating a disease that would kill me if left untreated. I feel backed into a corner at times... I wish you the best of luck in all your trials and tribulations. Have a good one.- MJ.

08-30-2017, 04:32 AM   #10
mellie
 
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MJ-

Thank you very much for the empathy and the advice! I will definitely look into CBD oil. I'm in Florida and they're building dispensaries left and right. HA!
I hope you, too, find that a treatment like this will help you and we can get off of the meds that, like you said, may cause a terminal illness. When we're in the middle of terrible pain, we'll take whatever the doctor is willing to give. I'd just prefer to have more knowledge and make better decisions. I, in no way, am advising anyone to move away from the course of treatment a doctor has provided....I just hope for a different course of treatment. Best to you! (scratch scratch).
08-31-2017, 10:55 AM   #11
Bufford
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LIke many here I have great fear of these treatments after Remicade failed me and left me living one year in misery. I look at these treatments as possibilities that require me to experiment with my body. Every single one of them have had side effects, while some provided some relief that was mainly temporary. The real sollution to maintaining my health has been diet, lifestyle, and natural therapies. Tumeric has been a miracle for me in the last 8 months taking it daily.
08-31-2017, 11:10 AM   #12
mellie
 
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Bufford, I appreciate your feedback. I, too, follow a daily tumeric schedule. In the morning, one of the first things I do is to drink a cup of warm cup of water with lemon and tumeric.
09-02-2017, 10:53 AM   #13
irongulch
 
Join Date: Sep 2017
I start Remicade in the next week. Little nervous as I have been on Humira for the last 8 yrs. It stopped working for me. Hoping Remicade works for me without the side effects.
09-02-2017, 12:01 PM   #14
ronroush7
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I start Remicade in the next week. Little nervous as I have been on Humira for the last 8 yrs. It stopped working for me. Hoping Remicade works for me without the side effects.
Hope it does great things for you.
10-11-2017, 09:58 AM   #15
Hobbits
 
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Hi All
Just to share my experience from the above drug, after 3 infusion I felt a burning sensation as It was being administered. I told the nurses and they said they hadn't heard of any side effects from other patients. I also informed them that I was experiencing hair loss, again they said they hadn't heard of it. I spoke to a senior pharmacist who agreed that these symptoms are from the drug.
I have now stopped the infusions after 4 treatments, since then I have had a severe reaction which after seeing a specialist they have diagnosed Psoriasis, find this hard as this drug is used to treat Psoriasis.
I have attached some pictures to show what could happen . But it isn't to say that you will get this but please make sure you have a care plan in place to cover any eventuality and keep a rescue pack of drugs available at home, i.e. antibiotics , steroids, creams etc.

If anyone needs more information about my experience please feel free to message me and I will try to inform you of the steps I've taken on my journey.

Good luck with your own treatments.
I have RA and Crohns.

I am starting Remicade very soon to control RA and Crohns, I worry about hair loss, as I had very bad hair loss with methotrexate and Arava. Was allergic to Humira, and been on Enbrel many years with no hair loss, hoping Remicade works with no hair loss. I looked on the official Remicade site and find no mention of hair loss, but keep reading posts about it....why wont the manufacture list this as a side effect?
10-11-2017, 10:25 AM   #16
Bufford
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I question any treatment that witholds known side effects. I believe that when a medication causes so much stress to the body that hair falls out makes me wonder what other negative consequences are happening to the body. Quite frankly I have found the side effects of all these experimental treatments not worth it. By controling diet, and stress and trying natural aproaches have had good results.
Having said that, we are all different, for some these new treatments have worked miracles. Its important to listen to one's body, and go with something that works for you, not your doctor.
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