Flare up

[webbs8]

Hi everyone

I started infusions infliximab 4 months ago for my chrons and it felt like a miracle with no more flare ups. But last couple of weeks a flare up started again!! Not sure if its to do with going back to work or another reason! Just wondered if other people on infusions have still had flare ups? Thanks

Leigh x

[Valbaty54]

Hi,

I've been on Infliximab for 3 years now, in combination with azathioprine. These have kept things reasonably well under control but I am rarely completely symptom-free. Are you on 8-weekly doses? If you continue to have problems, they might change the frequency to 6-weekly (I'm on this) or even 4-weekly. They can also increase it to a double dose. Do you flare just before the next infusion? If so they may test the level of the drug in your system at this time, or check if you have made antibodies. Maybe discuss with your nurse if it continues.

[webbs8 in reply to Valbaty54]

Hi Valbaty and thanks for your reply. Yes I am on 8 weekly now. I have chrons mainly in my mouth and small bowel. For 4 and a half years while getting severe ulcerated areas in my mouth before diagnosis i would have steroids which was the only thing that would calm them down so not sure if i will be able to have any while having infusions now!! This is the 1st flare up I have had since starting infusions 4 months ago. Thanks very much for the info and will message the flare up nurse if doesnt calm down x

[momofmmca]

Yes, my son was on Remicade—still had flare ups. He was told he didn’t need to change his diet. False. Diet is huge. He then had a reaction to the Remicade...and his GI was going to switch him to Entiviyo—but he decided he wanted to try to manage his Crohn’s with only his diet...he has been off meds since March...he is doing great. He is does not eat gluten, sugar or processed foods. He follows the scd diet mostly...with some AIP protocol thrown in there...you have to find what works for you. So far for him...it is working. All of his inflammation is gone except for a slight tip in his terminal ileum...and he had it throughout his entire colon and small intestine...apparently a bad case of Crohn’s that landed him in the hospital with an infection/abscess. He feels great, gaining weight and is learning how to manage it while listening to his body.

[webbs8 in reply to momofmmca]

Hi Momofmmca

Thanks for your reply and that sounds so inspiring about your son and so glad he is doing so well now. What is the scd diet? What would your son have now if he did have a flare up? Thanks x

[momofmmca in reply to webbs8]

The Specific Carbohydrate Diet...Elaine Gottachall perfected it, it was initially founded by a doctor for Celiacs Disease...but Elaine really researched it and brought it to the forefront for Colitis and Crohn’s...the book is Breaking the Vicious Cycle...and there are all kinds of websites and recipes out there to help you follow it. If my son has a flare up, he would just scale back on his diet even more—he has added some foods in that are added for when you are feeling better, if you are flaring you basically go back to square one implementing the basic diet until you feel like you can move forward again. I am not saying he will never go on medicine in a necessity...right now this is working. It is definitely difficult, but as you stay on it for a while it gets easier, and the benefits of health far at weigh the desire to eat “processed foods, sugar and gluten”.

[webbs8 in reply to momofmmca]

That sounds really interesting and helpful. Will definitely get the book and get trying it. Thanks for info about your son too x