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Anyone with success on Stelara?

kkaras

kkaras

Hey guys,

I've been searching around the forum for information/success stories/anything on Stelara and I've come up a bit short in terms of quantity of posts. Most likely this is because I still don't really understand how to search around correctly because I'm technologically challenged, but regardless, I wanted to start this post to see if there was anyone out there who is currently on Stelara, has been in the past, or is considering going on it who would mind sharing their story?

After an incredibly rocky year, 4 hospitalizations, and 3 insurance denials, we were finally blessed with an acceptance into the Johnson & Johnson Patient Assistance Program so I could start Stelara. I won't bore you with the details of the last year, i.e. medications I've tried, treatments/procedures I've had, etc. because this post would become a novel haha!

But here's a brief run-down: I had my first injection of the off-label Stelara (90mg) in mid-October after coming out of a 2 week hospitalization. The injection went well: I had no side effects, thankfully, and tolerated the medication very well. Since then, I've had another injection at 4 weeks and I'm waiting for my next injection which should be happening in the next three weeks. I am on 12.5mg of methotrexate, 9mg of Uceris, and 1600mg of Asacol for specifically my Crohn's. Supplement-wise I take fish oil, folic acid, birth control, a probiotic, biotin, a multivitamin, vitamin D, and Calcium pills. In regards to my diet, I am gluten-free and dairy-free, I eat low sugar, no red meat, and no high fructose corn syrup, MSG, Carageenen, or Whey. I have been seeing an applied kinesiologist and have been doing acupuncture weekly.

I've been trying really everything I can think of to get this flare under control but I still really haven't had the relief that I'm looking for. My inflammatory levels are still through the roof, my albumin is low, and so is my hemoglobin (although it certainly isn't as low as it has been in the past so for that I'm very thankful). I just got back from a 10-day check-up/stay at Mayo and my GI informed me that for most patients, you don't see an improvement in symptoms until month 3 to 6. I'm currently only 2.5 months into Stelara so I realize I still have some time before I may see improvement, but I'm just curious if there is anyone out there who has had success on Stelara? There doesn't seem to be a lot of information out there on the drug in patients with Crohn's, obviously because the drug isn't available yet. So any information would be greatly appreciated!! Just looking for a little bit of hope right now :)

Thank you all so much!
Kyliegh
 
Gary

Gary

Location
Canada
Hi Kyliegh,
Not much information on Stelara out there yet.
I'm new to this drug, so no opinion from me either. Success story or otherwise.
After 4 resections, fistulas and many drug failures, (including humira) my gastro Doc decided that Stelara was the next course of action. I had 3, 90 mg loading doses 1 week apart, (early Dec. 2013) then 90 mg every 8 weeks. Right now I feel great! but I must qualify that I may feeling good because I'm still tapering from a 40 mg coarse of prednisone. Also on 12.5 mg methotrexate. They seem to like to use methotreate in conjunction with this drug. I would be interested to know if you have seen any improvements since you have now been on it for 6 months.
Good luck to you.
Gary
 
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carbuncle

carbuncle

Hi Kyliegh,

Sorry to hear the Stelara is not controlling the flare very well for you. I just had my third dose and feel better as the anchor I thought I was carrying seams to be gone. I was not in a flare when I started but, Uceris was not helping enough.

It may help the albumin to eat more eggs and hemoglobin to take B12 shots once a month. These did help during one of my prior flares for improving energy levels. Also, lots of protein drinks as solid foods can be tough.

I am also on the methotrexate, but I am taking the timed released Delsacol.

Have you tried the Remicade, Humira, Cimzia or sufasalazine?

You did not mention where in the digestive tract your Crohns is located. Mine is focused in the descending colon primarily.

Hang in there as things can get better!!!

Whatever mankind can imagine, he will achieve.
 
ronroush7

ronroush7

Hi. I was on Remicade. It is causing a rare side effect :inflammation in my hair follicles. I went to a specialist at John Hopkins. She is recommending that I switch to Stelara. It is already approved for psoriasis and soon to be approved for Crohn's.

2
 
mrjohns2

mrjohns2

Location
Wisconsin
I am glad to see your post! I have been on Stelera 3 years for my server plaque Psoriasis. I was diagnosed with Crohn's 2 years ago, but narrowing of my ICV was noted 1 year prior. My GI did not have me on anything over the last 2 years thinking Stelera was/would do the trick. In the subsequent 2 years, my ICV is nearly 90% closed by a stricture. So, I am now looking at surgery. My new GI is saying he Stelera is obviously not cutting it.

That is my story.

As for the Stelera, I get a dose every 90 days. My derm will not go off label and up the dose. The issue is that I seem to get a psoriasis and Crohn's flare at about day 75. I had switched to Stelera from Humira. Stelera does a much better job at getting me nearly clear of the Psoriasis. The issue for me is it isn't all I need for Crohn's.
 
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