Crohns treatment

[Dotmatr1x]

Hi, I’m new to this site and was diagnosed last summer with Crohns. I was started on Pentasa, which unfortunately did not keep the disease at bay and I suffered a severe flare and have been on steroids off and on since December. I have since been on Adalimumab for 12 weeks and have been off the steroids for 3weeks. I am noticing similar symptoms to my last flare over the last four days and i’m concerned I am heading into another flare, it took so long to get it under control. I wondered if anyone has experience of this treatment and whether you still experience flares? And does this mean the treatment is not working? Your advice is appreciated.

[willow24 Administrator]

Ring your ibd nurse or consultants secretary, you may need steroids for longer or to start azathioprine, mercaptopurine or methotrexate. These suppress the immune system and are sometimes used alongside the biologics. Unfortunately they take up to 12 weeks to get to therapeutic level. It can take a while to get meds right, as IBD has many levels and degrees of severity so whilst some people manage without meds, others need strong meds.

Try and get on top of this early if you can x

[Dotmatr1x in reply to willow24]

Thank you, I am going to call my IBD team later today

[Hidden]

Your IBD consultant should have advices you whether you were expected to see improvement on the biological immediately or delayed. The steroids are given as a bridge gap to carry to to that point. Once you taper the steroids and if you are back in a flare at the time the biological should have kicked in, it typically means the biological agent is not working for you. Whether or not it is working at all or just not enough and whether or not you need to increase the dosage of any medication or add an immune suppressing drug is for your doctor to decide based on your symptoms, blood inflammation markers and eventually a scope or other camera exam. The steroids are just a temporary measure. Do you remember what your doctor advices you in terms of when to expect improvement with Adalimumab?

[Dotmatr1x in reply to Hidden]

Hello, my IBD team informed me that my bloods looked good after 12 weeks on Adalimumab, and I was feeling better at this point. They are hoping that I may just need an increase of dosage to get me back on track, they said my body might have started metabolising the Adalimumab to quickly . I am waiting blood tests to confirm the Adalimumab level in my bloods before they decided this. They have put me back on steroids for now......so hopefully in a few weeks I will have long term solution that is working again

[Hidden in reply to Dotmatr1x]

Hi, I’m glad that it seems it was working albeit it not so effectively right now because this may be solved with an increase in the dosage. Being back on steroids obviously is not ideal but it will help you out until you are back on track. Good luck to you. I wish you all the best

[Eixor57]

I was also on a med similar to Pentasa and it did not work for me. I was given inflectra which is a generic of Remicade. This began working for me but took a couple of weeks. But I also must tell you I am also on the Specific Carbohydrate Diet. I notice that eating this diet (eliminating even mire legal foods) I am healed up. Colonoscopy 6 months later was about perfect. My doc even used the word “miracle”. I pray a lot too as well but honestly the diet helps a lot. I’m hoping to get off meds soon and just continue the diet.

[Dotmatr1x in reply to Eixor57]

Hi there, thanks for your input, i have not made too many changes to my diet. I am will look into this