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Crohn's Disease
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Posted 6/20/2022 10:09 PM (GMT 0)
Not sure if I should keep adding to my previous posts or not, but since things have been quiet here of late, decided to start fresh.

My Daughter had her loading dose of Stelara today. Seemed to go well. Other than feeling tired, there seemed to be no adverse reactions so far.

Time will tell, hope this will turn out do be a good choice going forward.
Posted 6/21/2022 12:37 PM (GMT 0)
Awesome news, so glad she finally got approved. Hopefully Stelara will agree with her. I know the first dose is by infusion & the rest is by injection. Any idea when her injection will be scheduled?
Posted 6/21/2022 11:34 PM (GMT 0)

straydog said...
Awesome news, so glad she finally got approved. Hopefully Stelara will agree with her. I know the first dose is by infusion & the rest is by injection. Any idea when her injection will be scheduled?[/quote

Hey Susie,

I believe it's every 8 weeks. She does go in ahead of that to get some direction/instruction on self injecting. Still trying to learn more about Stelara. Not sure as of yet how long it takes to reach a max therapeutic level. As I said, time will tell of course. Hoping for the best. Thanks for posting.

Posted 6/26/2022 3:47 PM (GMT 0)
Wonderful news!! I hope it works as well for her as it's done for me.
Posted 6/26/2022 10:31 PM (GMT 0)

U B Tough said...
Wonderful news!! I hope it works as well for her as it's done for me.[/quot

Thanks very much. Hoping for the best as well.

Posted 7/4/2022 11:07 PM (GMT 0)
Any update 73?
Posted 7/5/2022 10:48 AM (GMT 0)

U B Tough said...
Any update 73?

Pretty much just steady as she goes. Not sure what to expect in the first few weeks. She seems to have no side effects. Also, not sure how long Stelara takes to get to an optimal effectiveness. I remember when starting Remicade, it was like an instantaneous miracle drug.
Posted 8/12/2022 5:59 PM (GMT 0)
Any update 73monte? I hope she is well.
Posted 8/13/2022 2:46 AM (GMT 0)
Hi xy,

Thanks for asking. Pretty much the same as my last update. She seems to be doing fine, and gets the first do-it-yourself dose on the 20th of this month. Really hoping she gets the same effectiveness as she did with Remicade, but will be a wait and see approach.
Posted 8/13/2022 7:57 AM (GMT 0)
If she isn’t using already, adding thiopurines (maximum dose for Crohn’s) to the biologics may greatly help with achieving and sustaining remission. I wish her the best.

I’d appreciate it if you let us know about her progress from time to time.

Post Edited (xy123) : 8/13/2022 2:35:50 AM (GMT-7)

Posted 8/14/2022 2:17 AM (GMT 0)
She was on combination therapy for many years with Remicade. Her GI decided to take her off of Imuran, and just stay the course with Remicade about a year+ ago. So far no talk about resuming, but I'll be sure to mention it to her to inquire about it at her next appointment. Thanks for mentioning.
Posted 8/21/2022 11:37 PM (GMT 0)
Somewhat of an update:

My Daughter has been on Stelara now for about 2 months. Has had the loading dose, and one self administered dose.

Seemed to be doing well, but about 2 weeks ago, started having lower abdominal pain. Thought it might be a UTI. The Doctor put her on an antibiotic right away, as they wanted to get a jump start just in case.

The antibiotic was for only 3 days, but don't know which one. She seemed to start having stomach upsets from it. She always presented with constipation, but now is having diarrhea every day. Doesn't seem to be settling down.

Could it be that the Stelara hasn't taken hold as of yet. Not sure if it takes months to reach a therapeautic level, as with some anti-TNF's. No other serious symptoms, other than everything she eats goes right through. No fevers, fatigue, etc.

She's calling the Doctor in the morning to see if they can see her. She has a GI appt. in about a month. Any advice greatly appreciated as usual.

P.S: Just found out the antibiotic is called sulphameth-trimeth. Common for UTI's, but the side effects listed can be diarreah for up to two months? Now what to do?

Post Edited (73monte) : 8/21/2022 5:01:51 PM (GMT-7)

Posted 8/22/2022 12:30 AM (GMT 0)
Antibiotics destroy the good & bad flora in the gut. Can she go to a pharmacy & ask for the best over the counter probiotic. Any time I am given an antibiotic my gi reminds me to buy what is called Floraster which is right off the shelf. My bets the antibiotic has thrown everything out of wack, so sorry this happened.

Keep us posted.
Posted 9/5/2022 2:30 AM (GMT 0)
Just wanted to check in - how is she doing?
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