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Stelara Journey

Hey all! I've posted a few times on this forum but I'm hoping to do something more steady now. I'm hoping to document my success or failure with Stelara so others have something to go on, because I wish I had more research when starting, so I will go forth for others!


I've had my first injection of Stelara today. So far so good. The injection hurts much less than Humira and Cimzia. It doesn't burn badly either. The needle is so small. I had a 90 mg injection and will have the next one in 2 weeks.

Some past stuff: I've been on Humira, Cimzia, and prednisone twice. I've had TPN because my colon was not absorbing any nutrition, but I have recently had my Hickman catheter removed after nearly 2 years. I am 21 years old: so technically I don't fit on the "Kids with Stelara" forum ;) and I've been diagnosed with Crohn's disease for 4 years (aka the entire time I've been in college). I take supplements, but have been off of any medication for about 2 years before the decision to start Stelara. My doctor told my that I couldn't NOT be on medication anymore and this seemed like the best option.

I'll keep you guys updated! Wish me luck.
 
Hi, Loki. I am on Stelara presently but have a suspicion after I see the specialist on Wednesday he will suggest another biologic. My wife had thought maybe I could go back on Cimzia but I was under the impression that you usually can't go back on the same biologic once you have been on it. Best to you.
 
Ronroush7, you can go back to a biologic you just have to be tested for antibodies. There are several members that have been able to successfully return to a biologic they have previously used. The risk is just much higher that your body will develop antibodies by stopping and starting back a biologic.

Loki_chaser, I hope the stelara works great for you and thanks for posting your journey it will definitely be helpful for other
 
I was on and off of Humira for years without incidence, and it continued to work every time I resumed it. I've heard stories otherwise, though.
 

Maya142

Moderator
Staff member
My kiddo was on Remicade 3 times without any reactions or antibodies (we tested to make sure). Remicade worked the first two times but not well the third time. I was terrified she'd have an allergic reaction the third time, but no issues.

Some people are able to go back on biologics successfully, you just have to be careful.

Loki_Chaser thanks for sharing this with us. My daughter is 19 and Stelara might be her next option.

I am 21 years old: so technically I don't fit on the "Kids with Stelara" forum
You are more than welcome to share this on "Kids on Stelara forum" if you want to. I'm sure your parents still see you as a kid ;). Plus, we have plenty of parents with older kids (18 and up) on the forum.

Good luck! I'm so glad it hurt less than Humira and Cimzia.
 
Ronroush7, you can go back to a biologic you just have to be tested for antibodies. There are several members that have been able to successfully return to a biologic they have previously used. The risk is just much higher that your body will develop antibodies by stopping and starting back a biologic.

Loki_chaser, I hope the stelara works great for you and thanks for posting your journey it will definitely be helpful for other
Thanks, Clash.
 
Thanks for all the replies guys!

About Humira: it was actually the first drug I tried after being diagnosed and with a GI who didn't really seem to care about me. I had terrible fevers that would come at the drop of a hat and for no reason, and a weird skin condition that popped up on my legs. I had that nearly 3 years ago and it took my body that long to get it out of my system. I am terrified of it and would never go back!
On the other hand, my mother has a friend who had tried multiple medications and on Humira she is a new woman. Glad it worked for her but I stay away.

Something has to work eventually for me right?

To those who are on Stelara: how long/ how many doses did it take for you to notice a difference?
 

Maya142

Moderator
Staff member
We were told Stelara is one of the drugs that takes more time to work - not as fast as Remicade/Humira. Our rheumatologist said about 6 months.

That said, the doses used for rheumatology are much lower - 45 mg every 12 weeks, I think. So that's probably why it takes longer.

Good luck! I hope Stelara is your magic drug!
 
We were told Stelara is one of the drugs that takes more time to work - not as fast as Remicade/Humira. Our rheumatologist said about 6 months.

That said, the doses used for rheumatology are much lower - 45 mg every 12 weeks, I think. So that's probably why it takes longer.

Good luck! I hope Stelara is your magic drug!
Me too
 
Hi! I keep meaning to update the thread but I've been majorly busy! I recently was well enough to get a job and move to a new city.
Stelara has worked amazingly for me like nothing did before, not even Prednisone. I take a 90 mg shot every 8 weeks. I have had barely any joint pain, reduced my trips to the bathroom to 2-3 times per day, had little to no cramping. I still have gas sometime but it's less crohns based and almost directly tied to if I eat something like broccoli. I was on SCD diet but now have added some foods back, so it's more of a elimination diet. I have MTHFR mutation so I make sure to take a lot of B12 and vitamin D which has also helped a lot. I also include the pro optic Sacc. Boulardi. I also do excersize and work a full time job now. If there is anything else I can provide, let me know.
 
Hi! I keep meaning to update the thread but I've been majorly busy! I recently was well enough to get a job and move to a new city.
Stelara has worked amazingly for me like nothing did before, not even Prednisone. I take a 90 mg shot every 8 weeks. I have had barely any joint pain, reduced my trips to the bathroom to 2-3 times per day, had little to no cramping. I still have gas sometime but it's less crohns based and almost directly tied to if I eat something like broccoli. I was on SCD diet but now have added some foods back, so it's more of a elimination diet. I have MTHFR mutation so I make sure to take a lot of B12 and vitamin D which has also helped a lot. I also include the pro optic Sacc. Boulardi. I also do excersize and work a full time job now. If there is anything else I can provide, let me know.
I am so glad for you.
 
Hello ronrousch7, I am about to start Stelara. Did you have an induction transfusion and if yes, what was the amount? Also, was the transfusion administered similar to Remicade, whereas, they start the infusion flow very slowly then increase the flow? Any post infusion effects? Also, can you infuse or inject if you have an upper respiratory infection, cold, etc?

Thank you for your help - very much appreciated.
 
Hello ronrousch7, I am about to start Stelara. Did you have an induction transfusion and if yes, what was the amount? Also, was the transfusion administered similar to Remicade, whereas, they start the infusion flow very slowly then increase the flow? Any post infusion effects? Also, can you infuse or inject if you have an upper respiratory infection, cold, etc?

Thank you for your help - very much appreciated.
Call your doctor but I think you will have to wait until you are better before getting the Stelara. With Remicade, I sat in the hospital for a few hours but with the Stelara a nurse came to the house and gave me the shot. I don't remember the cost but it wasn't nearly as bad as Remicade.
 
Call your doctor but I think you will have to wait until you are better before getting the Stelara. With Remicade, I sat in the hospital for a few hours but with the Stelara a nurse came to the house and gave me the shot. I don't remember the cost but it wasn't nearly as bad as Remicade.
Thank you very much. With regard to "the amount", I should have clarified, the amount of Stelara (mg's) you received with your induction IV infusion. I am receiving an induction IV of Stelara then will have follow-up self home injections - similar to Humira. Thank you again - very much appreciated.
 
Hi! I keep meaning to update the thread but I've been majorly busy! I recently was well enough to get a job and move to a new city.
Stelara has worked amazingly for me like nothing did before, not even Prednisone. I take a 90 mg shot every 8 weeks. I have had barely any joint pain, reduced my trips to the bathroom to 2-3 times per day, had little to no cramping. I still have gas sometime but it's less crohns based and almost directly tied to if I eat something like broccoli. I was on SCD diet but now have added some foods back, so it's more of a elimination diet. I have MTHFR mutation so I make sure to take a lot of B12 and vitamin D which has also helped a lot. I also include the pro optic Sacc. Boulardi. I also do excersize and work a full time job now. If there is anything else I can provide, let me know.
This brings me so much hope. I am currently on 40 mg of prednisone due to the joint pain that comes with Crohn's (some say it's RA, but Rheum says no). I have been on Entyvio for 2 years and it's been amazing for the Crohn's but the joint pain is unbearable. I am hopeful that Stelara will be the end of this struggle. I am waiting for insurance approval, then I will get the infusion first and 8 week injections after that. Glad to hear it's working for you. I cannot wait to get off the steroids. It's hell.

I have a few questions for you. Did you have joint pain before with Crohn's? Are you taking MTX or anything else with the Stelara? How quickly did it work for you?
 
This brings me so much hope. I am currently on 40 mg of prednisone due to the joint pain that comes with Crohn's (some say it's RA, but Rheum says no). I have been on Entyvio for 2 years and it's been amazing for the Crohn's but the joint pain is unbearable. I am hopeful that Stelara will be the end of this struggle. I am waiting for insurance approval, then I will get the infusion first and 8 week injections after that. Glad to hear it's working for you. I cannot wait to get off the steroids. It's hell.

I have a few questions for you. Did you have joint pain before with Crohn's? Are you taking MTX or anything else with the Stelara? How quickly did it work for you?
Are you receiving any IV iron as well?
 
I am 12 weeks post stelara infusion. I am OFF entocort. Now I just take 7.5mg of prednisone for the knee swelling. So far the I have no GI symptoms. The stomach pain and bowel problems have resolved. I still have this joint swelling, which is why I am getting knee injections and on low dose prednisone (although I am on such a low dose that it does not affect the bowel). Can anyone comment on the joint symptoms that have been helped by stelara. I am hoping my joints will get better. So far I am doing well from a bowel perspective.
I will get my labs drawn on monday to see if my anemia and inflammatory markers are improving.
 
I commenced Stelara about 12 months ago. Without any doubt, where a raft of medications (excluding Infliximab which I was never prescribed) were ineffective there has been a considerable improvement in my health.While not perfect, I have been able to drastically reduce the amount of antidiarrhoeal medication previously taken and saved a fortune on toilet rolls!

After the initial infusion, I was prescribed 90 mg 8/52, however recently I noticed that in the last quarter of this regime I began to slip back to more frequent B/A's .My kindly and thoughtful gastroenterologist has increased the dosage to 90 mg 6/52. As a retired RN I do my own subcut injections -no problem. Apart from fatigue, this is the best I have felt in the last 25 years!

Happy Christmas Everyone and all the very best for 2019.
Cheers,
Merv
 
I commenced Stelara about 12 months ago. Without any doubt, where a raft of medications (excluding Infliximab which I was never prescribed) were ineffective there has been a considerable improvement in my health.While not perfect, I have been able to drastically reduce the amount of antidiarrhoeal medication previously taken and saved a fortune on toilet rolls!

After the initial infusion, I was prescribed 90 mg 8/52, however recently I noticed that in the last quarter of this regime I began to slip back to more frequent B/A's .My kindly and thoughtful gastroenterologist has increased the dosage to 90 mg 6/52. As a retired RN I do my own subcut injections -no problem. Apart from fatigue, this is the best I have felt in the last 25 years!

Happy Christmas Everyone and all the very best for 2019.
Cheers,
Merv
Was wondering which type of injection it would be, thanks. Was worrying it was going to have to be in muscle. I start in 6 weeks. Wish me luck.
 
Hi. I have been on Stelara for 17 months now. I was switched over having developed an extreme skin condition 60 months into Remicade. Stelara is a subcutaneous injection so it's easy to do from home & all in all I really rate it. However, I am interested to know if people get the tiredness setting in after a while? Also it would seem that in Austraila & the USA they allow 90 mg every 8 weeks? Here in the UK it's only every 12 weeks. I guess that's why I start to get more tired with increased bowel issues from weeks 7 to 12?
 
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