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02-04-2012, 10:43 PM   #1
raechel
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Stelara

Has anyone been on Stelara (ustekinumab) for their Crohn's Disease? The last time I traveled to see my Mayo Clinic GI she recommended Stelara as my next treatment option. My local GI has no experience with this drug, but is willing to try to get insurance approval if I push for it. It would be really helpful to hear from anyone else who has used this.

Thanks!
Raechel
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
02-08-2012, 08:41 AM   #2
David
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Hi Raechel,

I'm sorry that you haven't received any responses until now. I'm not on Stelara and I'm not familiar with anyone here currently on it (though there are people looking at going on it as well) mostly because it would be off-label use here in the states. It's not currently approved for use with Crohn's Disease but clinical trials are ongoing and have been promising. You can read a news report here.

Hopefully someone does come across this thread who is on Stelara as I'd love to hear about their experiences as well. If you do go on it, please keep us updated as to your progress with it!
02-08-2012, 11:13 AM   #3
raechel
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Thanks, David! I will definintely keep everyone posted if I do start the stelara.I would prefer stem cell therapy to stelara, but I am waiting on that as well. I went to Northwestern in December and I qualified for the stem cell transplant, but I am waiting for insurance approval. Aenta denied the inital request, and I am waiting on the appeal now... If the appeal is denied, I just might give Stelara a try! Maybe by then someone else who has tried Stelara will see this post and give me some input too :-)
02-08-2012, 11:15 AM   #4
David
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Wow, what grounds did Aetna deny the stem cell therapy on?
02-08-2012, 02:56 PM   #5
raechel
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The formal denial was worded that it was experimental, and had not been proven effective for crohns, etc... But, when I talked to northwestern they said the real issue is with the fact that it is employer funded Aetna, so my insurance is not only though aetna but UPS as well (although my membership cards, EOB's etc. are only from Aetna). Basically, it sounds like in order for Aetna to approve it they would also have to have UPS (employer) give it the okay. Nothwestern is filing the appeal for me.... fingers crossed!
02-10-2012, 02:45 PM   #6
s5599
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Hi - I am using Stelara for my Crohn's approved for off-label use. It's the only drug that's helped me. Remicade helped for a couple of years, but once I lost that, none of the others worked. I've even tried Tysabri. (scary). It was amazing! Within 2 months I am in clinical remission and all of my labs are normal! First time in 5 years! (My ESR was constantly 80, now 25... CRP was 50, now 6) I still feel stuff and have to use rectal meds, but i feel SO SO much better.
02-17-2012, 05:11 PM   #7
raechel
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s5599- Thank you so much for your reply. It is great to hear from someone that has been on stelara, and even better to hear that it has worked! I similarly had remicade work for a short time, and have had trouble finding an effective treatment since then. Hearing from someone with personal experience makes me more optimistic about this as a treatment option.
Have you experienced any bad side effects?
04-03-2012, 05:52 PM   #8
Linn
 
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Hi! Any information on getting stelara in the united states off label would be greatly appreciated. I think this may be my next move.
04-03-2012, 07:03 PM   #9
raechel
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Linn- I am thinking it may be my next move as well. I haven't had much success researching it, and have got conflicting opinions from different GI's. One told me she is having a lot of success with stelara with patients that did not respond to the anti-TNF's (Mayo Clinic, MN doc) . Another told me to avoid it because there is too high of a risk of neurological issues in people with Crohn's ( Northwestern in Chicago doc). I am meeting with my local GI next Tuesday to further discuss. Please let me know anything you find, and I will do the same. Good luck!
04-03-2012, 08:00 PM   #10
Linn
 
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Pish-posh...neuro problems? I was on tysabri 3 years and felt amazing....and I'm a medical student, constantly around sick people. I will totally keep you posted with whatever I find out. I have a feeling this stuff is going to be awesome, it seems like it works for a lot of tysabri responders. Those 3 years on tysabri were the healthiest of my life, I took no other meds and felt like a new woman. Good luck to you.
04-03-2012, 09:21 PM   #11
glum chump
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I was on Stelara as part of a Phase II study, and it worked brilliantly for me. I couldn't afford it as an 'off-label' drug, so wasn't able to pursue it. I have MS and didn't notice any adverse affects on my neurological symptoms, although I've been on other drugs that have made my symptoms worse.

The company that makes Stelara has recently began sharing their findings from their Phase II study, and I believe they're looking now to get approval for beginning Phase III study. From what I can tell, the results were rather lukewarm...people either responded really quickly, or didn't respond at all. But there were enough positive results for the company to proceed, so that's good news for having another option in the available Crohn's drugs.

Cheers,

Kismet
04-05-2012, 12:17 AM   #12
kdgdi
 
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I am part of the phase 3 study. Got my mystery dose on 4-2-12. Do not notice any significant changes yet. Only been a few days. I will try and keep you updated on my experience.
04-05-2012, 07:58 AM   #13
raechel
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kdgdi- I would REALLY appreciate that! Good luck!
04-05-2012, 10:39 AM   #14
Linn
 
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Rachel
I am at my docs right now. Wish me luck, I'm goin in asking for the off label. Pray for me.
04-14-2012, 08:08 PM   #15
Ian2390
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Day 1 on Stelara. 4 years into a flare and failed Remicade, Steroids, Humira, Tysabri. Let's hope Stelara works.
04-14-2012, 08:09 PM   #16
Linn
 
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So amped for you Ian. Keep us posted. Are you in the study or off-label?
04-14-2012, 08:10 PM   #17
Linn
 
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P.s...update---I got my doctor to write it off label. Now its a matter of either getting my insurance to cover it or finding a way to pay for it. We're awaiting the decision of my insurances....fingers crossed.....gahhhhh.
04-14-2012, 08:13 PM   #18
Ian2390
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Off label. My insurance paid. It would have cost $40,000 for 3 90mg shots.
04-14-2012, 08:17 PM   #19
Linn
 
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I KNOW. i couldn't believe the price.

my doc wants to do a 270 mg induction (based on a 6mg/kg induction being used in the phase III trial now) and then a 90 mg maintenance every 8wk thereafter...
04-14-2012, 08:28 PM   #20
David
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Wow, I had no idea Stelara was that expensive. Crazy.

Ian, please do keep us updated on your experience! I'm sure many here would appreciate that. Fingers crossed for you!
04-14-2012, 09:32 PM   #21
kdgdi
 
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It is almost 2 weeks into the study. Today I had the closest to a regular bowel movement that I have ever had in over 4 years. I am feeling much more "normal" than I have ever felt as well. It is strange to feel better when you have been sick for so long. I am happy to think that this might be the drug that puts me into a remission!!!!
04-14-2012, 09:35 PM   #22
kdgdi
 
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What is off label?


My insurance also denied me and even with appeals. I was quoted 5,000 for the shots. I have blue cross blue shield insurance. I was glad to be able to get into this study.
04-16-2012, 07:30 AM   #23
raechel
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Wow, so much insight. Thank you everyone! Linn- I will be praying for you that you can get insurance approval! I too got my doctor to agree to prescribe off label, but am waiting to hear from insurance now. I haven't been able to find what it would cost me out of pocket otherwise aside from what you and Ian have posted here. I am already fighting with my insurance to cover a stem cell transplant. Maybe they'll compare costs of the two and at least approve one... I hope.

Ian- Did your doc want dosage similar to Linn's? 270 off the bat (so that would be 3 of the 90mg shots right?) then 90mg every 8 weeks after that? At that point one could expect around 120k for the first year if paying out of pocket? Am I doing my math right?

kdgi- Thanks for the update! I am so glad it is helping you and you are finally getting some relief. Please continue to let us know how you are doing. It is looking like Stelara might be the next up and coming thing to treat this pain in the butt disease and I am very eager to hear your experiences with it. Have you noticed any side effects so far? As far as "off label" , it just means that although stelara has not been FDA approved for the treatment of crohn's disease my doctor wants to prescribe it for that reason because it has been shown to be beneficial in other patients with Crohns. It's just like how they give some seizure medicines to people with migraines because it helps. It is just harder to get the insurance to okay it since it is not yet approved for that use. In regards to the price of the shots 5k is a lot less than the around 13k that Ian was quoted. Were you offered some kind of discount program?
04-16-2012, 02:09 PM   #24
Linn
 
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Off label. My insurance paid. It would have cost $40,000 for 3 90mg shots.
Hey Ian--what dose are you getting? Are you doing a 270mg induction, or are you doing 90 mg at week 0, 90 mg at week 4, and then 90 mg every 8 weeks thereafter?

thanks!
04-16-2012, 03:48 PM   #25
David
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Have you all seen the Stelara assistance program?

http://www.stelarainfo.com/pdf/instant-savings.pdf
04-16-2012, 04:18 PM   #26
Linn
 
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Hey David,

This isn't for Crohnie's....you have to be taking it for the FDA-approved indication, aka psoriasis. So no dice there. Thanks for thinking of us though!
04-16-2012, 04:28 PM   #27
David
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Well shoot, I should have read it more carefully. I'm really sorry
04-16-2012, 07:36 PM   #28
raechel
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David- Great minds think alike I suppose... I didn't read the fine print and called their 800 number today. They said the same thing..not for off label users... bummer. Stelara customer service was also unable to give me any info. related to use for crohns patients, or cost of the medicine period. Oh well, it was worth a shot right? (Pun intended ;-)
04-20-2012, 03:00 PM   #29
Linn
 
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Hi All--

just an update, my claim was rejected by my insurance company. We're applying to the Johnson and Johnson Patient Assistance Foundation while we appeal. So frustrating. Can't stop crying. I hate this disease.
04-20-2012, 09:03 PM   #30
David
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I'm so sorry Linn I hope the foundation can help!
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