• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Exhaustion from 1st Stelara infusion

I have recently been changed from Remicade to Stelara. I had my 1st dose via infusion 5 weeks ago. I was initially fatigued, which improved over 7 days. I had a combined nose and throat infection followed by a chesty cough. All which has now cleared. The medication is working brilliantly. It all seemed very positive with little side effects. Last week I was so tired I took to bed for 3 days. My head is quite foggy and it is difficult to concentrate, there is a slight feeling of anxiety which i believe is uncommon as it is believed to help reduce in many patients. I am not someone who usually suffers with anxiety. I felt very flat as if i had little emotion to very much. I have my first self administered dose in 3 weeks time. The clinic told me it could take 16 weeks for my body to adjust to the new drug. I was on Remicade for 18 months, no supplementary steroids as I don't seem to tolerate them well. Has anyone else experienced the same level of exhaustion, it seems to come in waves. Fatigue is something that we just have to roll with but this is different. Any experience of similar symptoms would be welcome news as I do not seem to fund anyone who has had the same or similar reaction when starting Stelara. Thank you for reading my story and I wish you all to be well and happy. Thanks Clare