STELARA Headaches Nausea, get better?

Hi there fellow champs,

Iam now about 7 weeks into Stelara. Iam almost due for second dose, which is a subcutaneous injection rather than an infusion like the first dose.

I have been having strange tension-like headaches for the past 3.5 weeks. The headaches are different to others I have had before in that they seem to "migrate" eg I'd have one start at the back of my neck, then about an hour later the pain will move to a spot on my head, then it will move to my eyes and forehead which would start hurting. Ofcourse the pattern varies.
I now have some nausea as well which started this week, along with some belching.
I did bring this up today with my GI at the appointment. He wasn't concerned and said these usually get better with the subsequent doses of Stelara as they are smaller than the initial dose.

Has any of you had these headaches with Stelara?
Did they get better with subsequent doses?

Thank you so much

I had a lot of headaches after the initial infusion/loading dose of Stelara. But they were in my forehead only, not my neck. They weren't much different from headaches I've always gotten, just a lot more of them for a few weeks. Their frequency went back to my usual amounts after I started the self-injections.

Hopefully yours will go away too.

Hey girl. I have never taken Stelara but hope things improve. You have had a really hard year. How are your Uc symptoms? Did they get better after the starting dose?

Side note but after I had covid, I got horrific migraines. I was never one to have headaches too often but they became my norm and I had to quit my job! I was just in misery all the time. I saw several doctors and had a ton of tests but the only thing that helped was a supplement cocktail from this neurologist I saw. 400 mg magnesium daily (can be split), 200-400 mg CoQ10 daily (can be split) and 100-200 mg B2 daily (I only needed 100 mg). You need to play around with what dose helps but I still have to take this daily years later. Covid did something bad to my brain! Tylenol never helped mine enough to warrant taking it all the time.

Thanks so much Joanna and Flowers for taking the time to respond and for the detailed replies
I'll definitely keep these recommendations in mind should the headaches resurface.

I have noticed the headaches improved thankfully, I suspect it was me doing these post-enema exercises to try and have the enema distributed in the colon. Some of these movements may have been straining my neck and upper back and hence the migraine-like headaches.
It's either that or the Stelara is wearing off as Iam only a week away from the next (second) dose. Iam doing 8-weekly.

Colitis-wise: Iam not doing that well. My disease is mostly in the rectum (proctitis). I still have watery mucousy discharge, sometimes with blood. There is also pain and significant urgency. The urgency got so bad that I had two accidents the last few days. This really got me feeling down because at this point I was expecting the Stelara to be working.
All-in-all: I would say my symptoms are not that different to when I first started Stelara.

Iam trying to stay hopeful and keep my chin up. I have also started seeing a psychologist. But honestly, I feel so much anguish and hurt on the inside. I keep telling myself that things could be worse and to be thankful, which Iam, but the daily grind of this disease and always having my head in my butt wondering whether this will trigger it or that, and feeling so tired and fatigued, not being able to eat properly, not being able to commit to a job, not being able to plan even a short get-away (forget about long holidays) are all getting to me.

Iam just tired of the yo-yo'ing. I just want to feel normal.

I have a referral for a surgeon as well to discuss options, J pouch or ileostomy. But this is a whole other world that I don't know much about and I have alot of learning to do in this area. I have to see him though because this is my third medication this year, Entyvio (lasted 18 months) then Rinvoq (lasted 5 months) and now Stelara. I have also become steroid resistant and Im at loss as to what to do if the bleeding or symptoms get worse.

Thanks for letting me vent.

Post Edited (Conquer UC) : 12/5/2023 3:52:10 AM (GMT-8)

Thanks Flowers <3

It's good to hear from someone on the other side that it does get better. We all need hope, sometimes that's all we have to look forward to.

Sorry to hear you’re feeling so low, Conquer UC. Venting here is a good thing to do, it allows you to let off steam where people understand what you’re talking about. This time last year I was miserable, in a very similar state to what you describe. It’s been a slow process and while I still have symptoms, I’m now feeling functional and restored to a life much closer to what I had before this whole mess. It’s not easy to see beyond today when you’re having accidents regularly, losing sleep, and generally missing out on life. But things do improve, eventually. I hope Stelara starts working for you soon. And getting information is empowering, so speaking to the surgeon is a positive thing to do whether you end up going that route or not. I hope things turn around for you soon. Treat yourself as well as you can meanwhile.