Infliximab reaction: I was just... - Crohn's and Colit...

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Infliximab reaction

I was just wondering if anyone here has had a reaction to infliximab? I had a delayed severe reaction which caused a severe headache shivering aching nausea the hospital thought I'd had a bleed on my brain I was in such a state! I had previously tried Humira then the Infliximab and neither has worked they want me to try Stelera but I'm really worried about trying another Biologic drug.

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Hi I have been on infliximab and although i did get a headache shortly after i found it worked well .

sorry to hear you are not able to tolerate this, make sure the staff administering these

biological treatments are aware off your concerns and previous reactions. so much can be overlooked and when we simply want our illness managed it is hard to think off everything as they fire questions at us. I personally make a note off all the questions i want answering and any concerns or reactions i may have had in the past .

We so need to take control back and research and ask others .

Good luck with your next consultation .

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Thank you for your reply Annie. I have had a lot of surgery in the past and I'd much rather go through that than try another Biologic drug! Sounds drastic but better than face that happening again!

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I totally understand , I too have had lots off operations and hate trying new meds but its the nature of the beast and we just plod on with hope they ... The professionals know what they are doing. My consultant is brilliant but i am always prepared with my own research and information before i accept anything and i like to know as much as i can .

I really hope you can find the results to make your life more comfortable .

I have had Crohns for thirty years , now i also have bladder cancer ..... no end to the ongoing treatments . Life is a to be treasured .

Do what you need for You xx

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God bless you I was diagnosed with Crohns 33yrs ago, I know medicine has come on leaps and bounds I guess I'm just becoming less tolerant all the time! Throughout the yrs my allergies have increased so that's why I'd be more comfortable as such with having more surgery! I really appreciate all your advice God bless you sending prayers your way x

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Blessings and prayers for a comfortable future . keep in touch and let me know how you get on and what treatment you decide .

I go for my biopsy results this coming Tuesday to see what they can do for my bladder cancer.

we must keep the faith that research will find some cures for these terrible illnesses

that many have to endure .

x

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All the best with the Biopsy please let me know how you get on and yes let's stay in touch, God bless X

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Hello how are you? Did you get your results? Abs x

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Good Evening

My consultant as referred me to Addenbrookes , unsure off the future or treatment , it appears i am a complicated case with my crohns and the medication i am on.

I have been looking more at the bilogical drugs i have been on and the links with cancer and it is truly scary .

so unsure off what i am to do next , i have delayed my next infusion for a few weeks

I hope you are keeping ok x

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Oh wow Annie I really hope you find a solution. They have told me the same but atm I've decided not to try any other Biologics. Stay in touch and let me know how you get on at Addenbrookes. God bless you🙏

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I will and thanks.

life is a journey of chaos sometimes , but the road off faith is simple

Blessings to you too x

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Hi Had a similar story with Vedolizumab, made me feel awful, in terrible pain and lost loads of weight as I could not eat. Now on Stelera but not happy with the biologics as I am just waiting for diagnosis of throat cancer, biopsy's taken on Friday. Never had any problems before they started giving me immunosuppressants. Made them write on my notes not happy taking these as I have had pre cancerous cells in a couple of areas. Wish I had continued struggling with Crohns and never gone to IBD department.

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Thank you for your reply and sorry to hear this Is happening to you. I wish you all the best. I don't think I can go on another Biologic I'd rather have more surgery!

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Hi how are you getting on ?

I have read your thread and agree, but we trust that the professionals know what they are doing

I wish you well and pray the biopsies are clear

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Thank you for thinking of me Annie, results are on Tuesday 14th May but worried as I have ENT appointment in the morning then another appointment has come through for Head and neck MDT Oncology in the afternoon, so expecting bad news. Still have tests next week Ultra sound on Wednesday and CT on Friday so just having to try to keep calm and not overthink until I know exactly what is going on. Good news is my Crohns does seem to have backed off

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Well you certainly have a lot going on.

Try and stay positive , I know it is hard . Thoughts and prayers with you ,

please let me know how you get on .

I am hoping to hear from the cancer specialists next week , but it may be the week after due the bank holiday, Every waking day is consumed off thoughts off cancer , just when i think i have put it to one side it pops up in my head . My crohns as settled after giving me some thirty years off grief , typical .... But we must stay strong and support each other

Blessings to all out there who are waiting for results off any sort or those that have results and are now contemplating the next line of treatment . xx

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Big Hug Annie, I know where you are trying not to worry but it just keeps niggling away at you when you least expect it. Keep in touch and let us know what they are going to do with you. One part of you wants to know but the other wants to run and hide if you are anything like me. We shall have to support each other. xxx

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Quick update Annie, cancer of the Epiglottis cartilage confirmed T3, possible small growth in lungs but may just be scar tissue so more tests for this. Laser surgery to remove cancer only option, might leave me with permanent feeding tube as it wont block the airway and I could aspirate my food. Bit scary but have to go with the flow and cross each bridge as we get there. Have you heard from hospital yet.

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Hi

So sorry to hear this news, but as you say you have to stay positive and keep going . life is too precious to let a little thing like cancer beat us xxxxx

Prayers for a speedy recovery and that the growth isn't connected.

One step at a time , support and hugs coming your way.

I had my consultation at Addenbrookes, the new consultant wants to start from scratch , so ECG, Bloods and an MRI, Ct scan off all the internal organs. A cystoscopy under a general to check the bladder any regrowth's with be removed and sent for biospy all to come in the next few weeks

Then consultation to see where too next.... so i am a little reassured that he is competent and will do his best

My crohns continues to be behaving itself ....

x

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I had a reaction to infleximab. My face and lips swelled during a treatment. Looked very strange! I had to have intravenous antihistamines and steroids as a pre-med before each dose. After about 6 months I developed antibodies so I’ve been swapped to Humira. Which I think is working. I know what you mean about the biologicals. They are scary. I recently dipped and my health declined quickly. I couldn’t take my Humira due to a chest infection. Everything settled when I got back on it. Made me realise how much I needed it.

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Wow scary stuff I don't think I'll give another one a try😶good luck with everything X

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