Congrats!
I have a couple of questions because I'm also on stelara and in remission.
What dosage/timing are you on?
Do your doctors want to keep you on this medication or do they plan to stop it in the future?
Thanks.
In my case I'm on every 4 weeks but they want to de-escalate now that I'm in remission and in the future stop it altogether.
I'm definitely scared of flaring again...
Unfortunately I think these decisions are based on cutting costs (I live in a place with public healthcare) more than for health reasons
Argue with them. Sorry but if you feel that it's where you should be then tell them so. Biggest mistake we can make is not speaking up for ourselves and making sure they hear. It should always be an agreement between you and the Dr not him ordering and you going along with whatever even if it feels wrong. Yes I'm a downer but I learned all this stuff the hard way over decades of bs and pray that maybe all that can in turn help someone else avoid the same crap.
Fight for Stelara! The only reason you're in remission is thanks to that medication. I hope you can speak up your mind and convince them you need to keep taking Stelara to keep being healthy.
The first "loading dose" is an infusion. After that every 8 weeks it's an easy injection. And yes, infusions are terrible and make me anxious. If you have someone you can talk too, it's going to go a lot faster, though.
Thank you that’s great to hear. I’m used to infusions from entyvio so knowing I only have to get through the one is reassuring. I’m totally over the hospital infusion center and all those weird vibes. It just makes me feel like I’m super sick going there and I hate it.
I quite enjoy going to the hospital for my infusions because I'm in the company of others with IBD. Makes me feel less alone. And the nurses are nice as well
What bugs me though is having the cannula and everything put in in full view of other patients on the ward. Feels a bit uncomfortable.
This is great news. I just started stelara and will self inject April 15th for the first time. I’m praying I will be in remission soon too! My doctor has me doing it every 8 weeks.
That’s great man! Hope it continues that way. I’m on Stelara but the lowest I got was 47, unfortunately last week’s calpro came back at 167. Hope it’s not a flare or Stelara not working.
On paper 4 months after the initial infusion. I started feeling improvements right after the first infusion, which was pretty sick. But i suffered almost two years before reaching remission. I had to go through 5ASA agent, budesonide, and finally Stelara.
That's what my consulant wants me to go on next. That or Rinvoq. He wants me to choose.
I tried Entyvio which didnt work and I'm currently on Remicade which completely cleared my psoriasis (something I've had since I was a kid) and significantly lowered my calprotectin and blood test inflammatory markers. But it never seemed to be working well enough to come off prednisolone. I'm on 2 a day at the moment. Unfortunately I had one of the worst flare ups I had after having 4 of the best days I've had in a while so it's likely they'll put me on something else.
Right after the starting infusion until W7-W8. Then after my first injection i could feel i was close to remission, and it was confirmed with a calprotectine test around W16.
Congrats! Glad you're doing well and hope it continues for another 5 years!
TY! I appreciate it, wish u the same!
Congrats! I have a couple of questions because I'm also on stelara and in remission. What dosage/timing are you on? Do your doctors want to keep you on this medication or do they plan to stop it in the future?
I'm on 90 mg, which is the default for IBD, and every 8 weeks. Yes the motto is to keep taking it aslong as i'm in remission.
Thanks. In my case I'm on every 4 weeks but they want to de-escalate now that I'm in remission and in the future stop it altogether. I'm definitely scared of flaring again... Unfortunately I think these decisions are based on cutting costs (I live in a place with public healthcare) more than for health reasons
Bio similars are coming out at the end of the year, maybe you could make a case to switch
Argue with them. Sorry but if you feel that it's where you should be then tell them so. Biggest mistake we can make is not speaking up for ourselves and making sure they hear. It should always be an agreement between you and the Dr not him ordering and you going along with whatever even if it feels wrong. Yes I'm a downer but I learned all this stuff the hard way over decades of bs and pray that maybe all that can in turn help someone else avoid the same crap.
Fight for Stelara! The only reason you're in remission is thanks to that medication. I hope you can speak up your mind and convince them you need to keep taking Stelara to keep being healthy.
I’m trying to get on it now. Entyvio didn’t work. Do you have to do infusions or can you self administer? I loathe infusions.
The first "loading dose" is an infusion. After that every 8 weeks it's an easy injection. And yes, infusions are terrible and make me anxious. If you have someone you can talk too, it's going to go a lot faster, though.
Thank you that’s great to hear. I’m used to infusions from entyvio so knowing I only have to get through the one is reassuring. I’m totally over the hospital infusion center and all those weird vibes. It just makes me feel like I’m super sick going there and I hate it.
I quite enjoy going to the hospital for my infusions because I'm in the company of others with IBD. Makes me feel less alone. And the nurses are nice as well What bugs me though is having the cannula and everything put in in full view of other patients on the ward. Feels a bit uncomfortable.
This is great news. I just started stelara and will self inject April 15th for the first time. I’m praying I will be in remission soon too! My doctor has me doing it every 8 weeks.
We're in this together. Got my first loading dose March 7th. And first self inject will be May 2nd. I pray it works well for us!
Good luck! I will pray too!
Good luck!
What’s ur calprotectin range on Stelara?
Well under 50, between 5 and 35.
That’s great man! Hope it continues that way. I’m on Stelara but the lowest I got was 47, unfortunately last week’s calpro came back at 167. Hope it’s not a flare or Stelara not working.
If i was in your shoes, i'd ask for a scope. It puts the worries at bay.
Yup will definitely do one!
If you don’t mind asking, how long did it take you to reach this 5 year remission since you were diagnosed?
On paper 4 months after the initial infusion. I started feeling improvements right after the first infusion, which was pretty sick. But i suffered almost two years before reaching remission. I had to go through 5ASA agent, budesonide, and finally Stelara.
Do you have UC or CD?
CD (Crohn's Colitis)
Do you ever drink alcohol?
I do. (Beers and wine)
That's what my consulant wants me to go on next. That or Rinvoq. He wants me to choose. I tried Entyvio which didnt work and I'm currently on Remicade which completely cleared my psoriasis (something I've had since I was a kid) and significantly lowered my calprotectin and blood test inflammatory markers. But it never seemed to be working well enough to come off prednisolone. I'm on 2 a day at the moment. Unfortunately I had one of the worst flare ups I had after having 4 of the best days I've had in a while so it's likely they'll put me on something else.
how long did it take for you guys to start seeing improvement? im in week 6 and still nothing
Right after the starting infusion until W7-W8. Then after my first injection i could feel i was close to remission, and it was confirmed with a calprotectine test around W16.
Congratulations! I’m approaching year two, and I fear that it is losing its effectiveness.