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Pain exhausted inflixihab? Or prenisone withdrawal??

Posted , 4 users are following.

natalie43462
natalie43462

Hi my son has been really having a rough time over the last few months he' starting taking inflixihab he's due he's 3 rd infusion in 2 weeks time. Just after he had he's 2 nd infusion he started to feel a bit better but at that point he was down to 15 ml of pred last Monday was he's last 5 ml and this week he's terrible again he's getting so much stomach pain can't eat has he fears the pain and he's constantly exhausted. Is it coming off the pred ?? Or the inflixihab ? The gaseo doctor has said she thinks now surgery is the best option they have said that the MRI results since he's been the inflixihab has made the bowel look at little better not has inflamed and he has a and he had a mass that has gone smaller they said he's to have the 3 rd infusion then I think they will operate. They have tried every thing just wondering why' he's so exhausted all the time any info of any one would be greatly appreciated x

0 likes, 3 replies

3 Replies

  • tracey36633
    tracey36633 natalie43462

    Posted

    Hi Natalie

    Sorry to hear your son is suffering. I started infliximab in December and have been suffering with exhaustion too. I felt as though the it was having a positive effect only a day or so after the first infusion but it doesn't really last. I'm hoping after my 3rd infusion on Monday things will pick up again. The fatigue is terrible and I'm not sure how to work around that one. Coming off Pred can be difficult too as they have such an effect on your body. I struggle eating some days but find having little meals (side plate sized) helps. A little is better than nothing. Hopefully he'll feel better after his next infusion but keep on at the doctors if not. I hope all goes well for you x

  • stephaney28634
    stephaney28634 natalie43462

    Posted

    Hi Natalie, sorry too hear what your son is going through. I am on Inflxihab since August last year had been getting my 5th Infusion next month. Yes, the infusion do make you feel really tired and think it could be combination of prenisone withdrawal. Hope he feels better sooon.
  • justyna17617
    justyna17617 natalie43462

    Posted

    Hi Natalie,

    Immunosuooressants unfortunately can make you feel very tired. I'm on humira (which is similar to inflixihab) and at the start of my treatment I also felt completely exhausted. I it got better over time but it took a while. As your son keeps having stomach pains and is worried about eat in I recommend to put him on a liquid diet. This should be easy on his bowel and hopefully not cause so much pain. Wish you both all the best xxx

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