I have been on Remade for about 2.5 years and it worked great at first but about the last 6-8 months I noticed symptoms more persistent again and my ferritin was very low so Dr did colonoscopy and said there was inflammation. Not as bad as before Remade but bad enough. Going to get the blood tests to see if levels of Remade are just low and no antibodies or if I have developed the antibodies. I am on the lowest dose right now so hoping that it might just need to be bumped up. However, Dr did mention Stelara as his choice for alternative if Remade ineffective due to antibodies. Body had a tough time starting Remade so now that I'm used to it would like to stick with it if possible. Anyone with experience on Stelara to help me prepare for possible transition and be hopeful this one will work? I have inflammation in the terminal ileum. Thanks.
Remade Not working, Dr suggested Stelara - Advice?
- Thread starter Novax
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Help Support Crohn's Disease Forum:
You might not be done with Remicade yet. If you haven't developed antibodies, an increase in dosage will probably make it more effective for you. Hopefully, you will be able to continue with the Remicade with an adjusted dosage and ride with that for a while longer. I know that Stelar has worked for many and it takes a few months to kick in. Hopefully you won't have to switch just yet.
Bouncing off of what Jo-mom said, you might just need a dose increase. Sounds like the same situation I was in and the doctor moved up my infusions from every 8 weeks to every 7. So far so good. But if you do have antibodies or need to switch, there are also plenty of other biologics that you can also try.
I have been on Remicade, then Humira for 3 yrs and active Crohns 2 X came back on me, so took me off Humira and now on Stelara for past 6 months.
Blood counts have come up, I put 10 lbs back on where in Humira I lost 15 lbs active Crohns returned 2 X while on that. SO, so far, Stelara feeling good, weight back on, blood counts have come back up, I would say, dont feel any different, but over all, doing better since 6 months on Stelara.
Good luck, trial and error for the DRs too, each of our bodies dont react the same, so some try this, or that and hope one helps us feel better is how this goes I feel? I have many of same problems Inflammation all over always, low iron and blood counts and other same problems more then not.
C J
Blood counts have come up, I put 10 lbs back on where in Humira I lost 15 lbs active Crohns returned 2 X while on that. SO, so far, Stelara feeling good, weight back on, blood counts have come back up, I would say, dont feel any different, but over all, doing better since 6 months on Stelara.
Good luck, trial and error for the DRs too, each of our bodies dont react the same, so some try this, or that and hope one helps us feel better is how this goes I feel? I have many of same problems Inflammation all over always, low iron and blood counts and other same problems more then not.
C J
Thank you everyone for taking time to relate your experiences. I just received the blood results and while I don't have antibodies I do have more than enough in my system to be working. Since it isn't Dr thinks it just is no longer effective for me. I don't quite understand how it works well then just stops working and why possibly moving to every 6-7 weeks for infusions might not help. I had so many side effects and trouble starting this that now that my body is acclimated I hate to go through the process again. Plus, I have insurance covering Remicade well and not sure of the financial cost to go to Stelara. Little anxious time changing medications.
- Joined
- Apr 15, 2012
- Messages
- 14,792
Jansen has a copay program
It covers most of your copay
Plus gives you sharps containers
Just need to sign up
As far as higher dose or more frequent remicade
If your body already has higher levels per your test then adding more typically doesn’t help
Make sure they give you bridge therapy (ie steroids or een ) until Stelara kicks in
That typically takes 6 months
It covers most of your copay
Plus gives you sharps containers
Just need to sign up
As far as higher dose or more frequent remicade
If your body already has higher levels per your test then adding more typically doesn’t help
Make sure they give you bridge therapy (ie steroids or een ) until Stelara kicks in
That typically takes 6 months
- Joined
- May 9, 2017
- Messages
- 215
Yes, Stelara works very well. Also minimal side effects. Luckily, i was able to start Stelara first without trying other biologics. I am glad I did. Hope your Stelara journey goes well. By the way, it takes up to 6 to 9 months to work. Also, you may need an increase in dose to every 4 weeks if the stelara is not working at every 8 weeks.
Same here. Stelara was (and still is) my first biologic. Still working well after two years on 8-week dosing.
