Strike 3 😞

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So after Azathiaprine causing Liver damage, steroids causing Cushing’s syndrome. Humira not working I finally found something that looked like it was going to work. Infliximab! After just one treatment I started to feel slightly better (aside from other issues I have going on non crohns related) but. And here’s the big BUT. Turns out I’m allergic to it!!! 😫😫😫

First infusion I felt quite tight chested afterwards so they gave me IV antihistamines then 12 days later I woke up with swollen tongue & struggling to swallow. Figured that was to do with my other complications I’ve got going on (suspected oral cancer) so spoke to 111 who told me to take antihistamines & see how I go. Was fine following day. Went for my 2nd infusion today & Dr decided it was too risky to do it so have cancelled the treatment! Now on nothing for my CD & awaiting to see what they come up with treatment wise later on in the wk 😞😞 I seriously can’t catch a break with this bloody disease 😞😞 Rant over! 

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8 Replies

  • Posted

    You poor poor poor thing!!!!!!!

    I know there’s a new one being used, I think it’s called stelera, I’m not sure if that would work.

    I feel so sorry for you xx

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    • Posted

      Thank you. They said there’s a new one on the market but have to get approved funding for it so that may be it. Stelera has been around a bit in the states as seen come ads for it didn’t think it had made its way over here yet so good to know it has.... Fingers crossed 🤞🏻

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  • Posted

    Hi, 

    How awful for you. I hope that your consultant can find something else to help.

    It is so hard dealing with constant pain and feeling ill.

    I have avoided conventional medications (refused Mercaotopurine) - I completely understand that this is not possible for everyone.

    I'm not sure if this is useful for you or not but I have got my Crohns into remission using just the specific carbohydrate diet (SCD) and low dose naltrexone. (LDN). The two together have been remarkable for me.

    I am not saying that they would work for everyone but If you'd like more info then there are some great Facebook groups. For me I felt that there was no harm in trying them.

    Good luck with everything xxxx 

    I hope that things start to improve soon for you xxx

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  • Posted

    Crikey! You're really going through the mill! 😳

    I think it's a very valid reason to rant!

    How frustrating that when you think something is starting to work it causes such a bad allergic reaction....

    I had about 5 infusions of Infliximab that were ok but on the 6th experienced anaphylactic shock, along with 3 other people in the clinic. It wasn't pleasant!

    I hope that your Doctors can find some treatment which works quickly for you.

    Will be keeping my fingers crossed!🍀

     

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    • Posted

      Thank you, as being on nothing again is not an option 😞 The staff were pretty good today by refusing to give it to me as said my overall health was more important. Just wish they’d figured this out before they’d IV’d me lol! 

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  • Posted

    Oh no! You had in IV hooked up and THEN they decide not to proceed? No wonder you're gutted!

    What a waste of your time - even if if was considered better for you not have the infusion!

    Its not the nicest place to be when you're feeling dreadful anyway is it? 

    I'm sorry that your new year a has gotten off to such a bad start. Let's hope things improve when you go for your next appointment!

    Please let us know how you're getting on?

    Take care! X

     

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    • Posted

      Thank you. Totally gutted about the IV lol, especially as this ones bruised & hurts 🙄

      They’re having their MDT meeting on Friday so will know by then what’s happening hopefully. Meanwhile, Thursday I have to see the oral specialist as gp suspects I have oral cancer 😞 Not the best of starts to the year... 

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  • Posted

    Update from IBD team. They are putting me on Stelera along with a low dose azathiaprine & alpruponal (as aza damaged liver last time). 

    Don’t know much about Stelera so any input on that would be great ??

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