Exhaustion from 1st Stelara infusion

[Claresabb]

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

 

[nate_87h]

Curious to know how you are doing now or if you had to switch

I'm having the same reactions, but I've been on Stelara for 6 years. These symptoms started 3 years ago for me (around when they upped me to the max dose every 8 weeks) and were intermittent until these last 4-6 months, now it's constant. The fatigue seems to get worse after injection so do headaches and brain fog, even muscle spasms. Gone through extensive neurological studies with nothing evident there. I can't even drive most days or go to work. GI wants to UP my frequency from 8 weeks to every 4 weeks but having inflammation in ileum they found. Scared to move up to every 4 weeks cuz of the side effects so discussed it with GI due to the extreme fatigue especially, but now they are considering switching me to something else...hopefully. But still they claim it "shouldn't be the Stelara" despite what my online search results have found in terms of side effects and extensive other bloodwork/imaging/studies have shown, not to mention daily logging of these side effects from the time of injection. Previously was on Remicade for 10 years before it became ineffective and started causing joint pain in hands and feet.

I would just keep an eye on it and log the symptoms daily after each dose for first couple weeks since that's about when it reaches peak potency and discuss them with your GI