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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Ustekinumab (Stelara)


12-13-2012, 04:28 PM   #1
Stephienc
 
Join Date: Dec 2012
Location: Cambridge, United Kingdom
Ustekinumab (Stelara)

Hello all,

I am new to the forum hoping to find others with Crohns that have taken part in or are taking part in a clinical trial with the drug Ustekimab, also known as Stelara. More importantly i wanted to share with you my experience on this treatment so far. I was only diagnosed in January 2012 and was put straight onto Prednisilone. After reacting badly to this I was tried on Azathioprine. After being hospitalised for a dangerous reaction to this (pancreatitus) I was put back on Pred and eventually suggested to be put forward for a trial with the drug used to treat psoriasis, Ustekinumab. Being classed as a severe crohns patient, i qualified for the trial and had the treatment administered at the hospital through fusion and injection every 4 weeks.

I cant speak highly enough of the results this trial has had on me. I now notice almost none of my crohns related symtoms (using the toilet, tiredness etc) and feel so 'normal' compared to how i have suffered. If anyone has been recommended this trial i would say please go for it, its been amazing for me so far. Has anyone else had results from this trial?
12-13-2012, 05:01 PM   #2
seebee
Senior Member
 
seebee's Avatar
 
Join Date: Jun 2012
Location: New York

My Support Groups:
Hi, welcome to the forum. I'm glad to hear that the Stelara is working for you.
Check it this link http://www.crohnsforum.com/showthrea...hlight=stelara for others who are doing the clinical trial.
12-31-2012, 01:15 PM   #3
nicolesmith123
 
Join Date: Dec 2012
Location: Montana
Hi! I have a Jpouch and my diagnosis of UC has changed to Crohn's. Since I've blown through most of the UC medications (including biologics) the doctor is trying to get approval for Stelara. Can I ask those who have taken it, what the dose is/was and how fatigued did you get while on it? Ech, never mind. I clicked on the other link and found the answer, but cannont figure out how to delete this post! Thank you!

Last edited by nicolesmith123; 12-31-2012 at 01:28 PM. Reason: found the answer elsewhere
05-16-2016, 12:23 PM   #4
CiaoBella
 
Join Date: May 2016
Location: Massachusetts
Hello All,

I too am new to this forum. I was diagnosed with Crohn's Disease at the age of 17 and having a father who also was diagnosed as a young man it was a great support for me. I was seeing an MD through a local hospital and struggled to find the right combination of medications to ease my symptoms. I was always very active in sports and religiously exercised in the gym but as my conditions got worse it was hard to find the energy to do so. After being frustrated with my lack of progress I was able to find an amazing doctor in Boston who was not only supportive, but didn't throw meds down your throat and was not threatened that you did your research on clinical trials.
The summer of my junior year in college I had my diseased section of my intestines removed. This was a life changing experience. I felt on top of the world, I was symptom free for 5 years on no medications. I ate a plant based diet, ran every day for three miles and never looked back. After multiple life stressors, which is usually what makes me flare I had about 4 years where I was struggling with my symptoms and unable to find the right kinds of medications. Finally my doctor and I had the conversation of Stelara. I was very nervous and apprehensive to try this medications as we don't know the long term side effects. I was approved and after my first shot, I have to say my bleeding stopped after three days (bleeding on and off for almost a year). The pain in my stomach was gone (in order to fall asleep I would need to have a heating pad) and my bowel movements had decreased from 15-20x's a day to 2 times a day after about a week. I never thought I would say this but honestly, I feel normal again. I highly recommend people who have failed all other meds as I had to try this medication. It was a miracle for me. I had my second loading dose a couple days ago and I have no known side effects (fingers crossed) and I am so grateful to my doctor.
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