How long for inflixinhab to work ?

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My son has been started on inflixihab for one week but also coming down on pred 15 mg he's in a lot of pain The doctors are trying to wean him of the pred because they want him to have a resection for a 7 cm stricture. There delaying the op because they say. He should be stonger for op if he's off steroids and to try and avoid a temporary stoma. but he's in so much pain at the moment so just wondering how long the inflixihab take to work ? If it works he's due for 2 no dose Monday ?

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  • Posted

    Hi Natalie

    It can take three to six months sometimes with biologic treatments to get past side effects and start showing benefits. But as with everything, everyone is different and it can work more quickly.

    Coming off the steroids is notoriously difficult. I have always found that the very last small dosage is a nightmare to stop. Probably because already the Crohn's symptoms will have returned (often worse than previously) and I'm frightened that if I stop completely it will get even worse. But I have found that a leap of faith and surrender to the inevitable is all that can be done....... it will take a little while for your son to find a better balance without the steroids but that final leap has to be taken. It is scary, but he will be ok. He just needs to trust that the awful feelings he's having will get better. Steroids really mess with your head.....psychologically and emotionally, not just physically. And he will be so much stronger to cope with surgery.

    I really feel for you both having to deal with all this stuff..... but it sounds like you are coping and doing the very best that you can.

    Sending you my best wishes.

    Hannah

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    • Posted

      Hi hanna thank you for your reply what is the side affects coming off the pren ? He's in agony My self I can't see the biological medication working ? I think and the dr thinks he needs it removed he's going to try some milk shake drinks in stead of food today has he's in so much pain after he eats but he's getting more pain at around the same time every night 4 am ? It seams it like a pattern the dr won't give him any more strong pain killers only paracetamol but there not giving him any relief he's now on 15 ml of pred and hoping for biological to kick in so he's in a lot of pain

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    • Posted

      I know it's awful and terrifying but I think he should be on a liquid diet completely if eating food is so painful. It's so important that he's getting the best nutrition possible and I imagine that he's probably got some deficiencies as he's been having issues for a while now. His ferritin, B12 and Vit D along with everything else should be checked.......some of his pain may be exacerbated by deficiencies.

      Coming off the steroids is a painful process. I usually just have masses of diarrhoea,really bad headaches, sleeplessness, feeling wired, general body aches and pains particularly in my joints and mood swings!!! It is horrible but so important to get off then. A liquid diet would help and more importantly give him better nutrition and give his bowel a rest. Structures are so painful and every time you eat you know the pain is coming so in the end you give up eating..... it's a terrible circle. At least with liquid food you get nutrition without the agonising pain of solid food. It may travel through quickly but at least it doesn't get stuck. Make sure it's MODULEN IBD Powder that is mixed as required and can be flavoured with milkshake flavourings. It's the cleanest and best option rather than the ready mixed cartons.....they taste like chilled snot!!

      And they're not as nutritional. MODULEN IBD has a naturally occurring anti inflammatory and is mostly absorbed by the bowel with very little waste..... it has saved my life many times.

      Anyway..... hope that is of some help.

      And good luck

      Hannah

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  • Posted

    Hi, i am on Inflixmab treatment since August last year. It started too work by 3rd infusion. Hope this helps, good luck to your son.
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  • Posted

    They shouldn't push the steroid removal. It can cause a relapse or worsening of the disease. I have had to tell my doctor NO! Because they don't like you to be on Prednisone, but it can help. Right now it may be a mistake to do it. If you have to get a second opinion. It is a tough disease to manage. I can tell you from my own experience. Not a day goes by that I don't have pain from this disease, but it is managable. My entire colon is diseased and I do manage to work full time, so he will get better, but it takes time. I have been on Prednisone now for 10 years because it is the only medicine that has worked for me. So he can be on it for a while at least until he feels better. I hope he gets better soon.

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