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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Stelara Support Group


 
01-04-2016, 07:28 PM   #91
ronroush7
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waiting approval from the insurance to start stelara. the Dr chose this over envytio because of the remicade induced psoriasis.
Stelara is supposed to be good for psoriasis and Crohns.
01-21-2016, 09:25 AM   #92
Salad_Shooter
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According to NHS (National Institute for Health Research), all trials for use in Crohn's Disease are expected to be complete by November 2018. *sigh*
01-21-2016, 09:29 AM   #93
ronroush7
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They currently have me on Stelara but my last enterography showed active inflammation. I think after I see the specialist next month, they are going to want to change biologics.

01-21-2016, 09:37 AM   #94
Salad_Shooter
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For my insurance to cover it (which is a joke in itself since they've denied everything so far), I have to wait until it's approved/licensed for CD.

I hope you find something that is effective.
01-21-2016, 09:39 AM   #95
ronroush7
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Thanks. I wish you the best.

03-18-2016, 11:56 AM   #96
rrhood1
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I've just been diagnosed with Remicade induced psoriasis so the dermatologist is applying for Stelera for me. I don't know much about it other than it costs a lot. Can anyone tell me how it's going for them - what kind of side effects can I expect? How often do you take it? I know it's an injection instead of an IV so that'll save time.
Thanks
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Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
03-18-2016, 12:48 PM   #97
ronroush7
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I've just been diagnosed with Remicade induced psoriasis so the dermatologist is applying for Stelera for me. I don't know much about it other than it costs a lot. Can anyone tell me how it's going for them - what kind of side effects can I expect? How often do you take it? I know it's an injection instead of an IV so that'll save time.
Thanks
I just got off of it. It was given to me every eight weeks. I didn't notice any side effects. I wish you the best.

03-18-2016, 12:49 PM   #98
ronroush7
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They might not have you on eight weeks

03-28-2016, 04:54 PM   #99
jonique
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I've just been diagnosed with Remicade induced psoriasis so the dermatologist is applying for Stelera for me. I don't know much about it other than it costs a lot. Can anyone tell me how it's going for them - what kind of side effects can I expect? How often do you take it? I know it's an injection instead of an IV so that'll save time.
Thanks
Hi rrhood1,

How is it going on the Stelara? I'm going to be starting it later this week after failing Humira, Remicade, Simponi and now Cimzia. this will be my fourth TNF in the past year!

I'm taking TNF for Crohn's and associated spondyloarthritis.

Jonique
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Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
03-28-2016, 04:59 PM   #100
ronroush7
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Stelara didn't do much for my Crohn's or for psorasis. I hope it is better for you.

03-28-2016, 05:47 PM   #101
rrhood1
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Still waiting for approval for the drug. Alberta Health has to approve it before they will pay for it. So I wait now.
Hopefully it will do something for me.
Thanks!
03-28-2016, 07:42 PM   #102
ronroush7
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Still waiting for approval for the drug. Alberta Health has to approve it before they will pay for it. So I wait now.
Hopefully it will do something for me.
Thanks!
Hopefully, it is soon.

04-06-2016, 05:00 AM   #103
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I started Stelara 2/2/16, after Humira stopped working and Entiviyo did nothing. I just got out of the hospital with another bad flare and small bowel obstruction. I came home and injected #3. The doctor added Entocort to try and reduce the inflammation. I met with the surgeon yesterday and scheduled a resection 4/28. This was my 11th hospitalization for obstructions. The scarring is there and has to come out. Not sure Stelara is going to work for me.
04-06-2016, 09:30 AM   #104
ronroush7
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I started Stelara 2/2/16, after Humira stopped working and Entiviyo did nothing. I just got out of the hospital with another bad flare and small bowel obstruction. I came home and injected #3. The doctor added Entocort to try and reduce the inflammation. I met with the surgeon yesterday and scheduled a resection 4/28. This was my 11th hospitalization for obstructions. The scarring is there and has to come out. Not sure Stelara is going to work for me.
I hope it does work for you.

09-19-2016, 02:51 PM   #105
rrhood1
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Well, just in the midst of a huge flare - fever, pain, diarrhea, nausea and the psoriasis is just as bad. GI has me on antibiotics, the dreaded prednisone to,see,if I can settle down. Wants to maybe up the doseage schedule to see if we can get it to work at all on anything. So far, no good.😓😷
10-21-2016, 10:25 PM   #106
RNGirl
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My GI wants to start me on a biologic. I've only been on Budesonide and Pentasa. Had a very bad reaction to Pentasa. Any suggestions, advice on Stelara? Is it easier to handle for most and have fewer side effects than Humira? Thank you so much in advance!
10-21-2016, 10:46 PM   #107
ronroush7
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Everyone is different but Stelara didn't do much for me. With Stelara, someone came out to gave me the injection but I give myself the injections with Humira. I hope the best for you.

01-09-2017, 07:30 PM   #108
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I just started Stelara 1 month ago after failing Humira and Entyvio. I also was on Remicade in the past and it worked for a couple of years before I developed antibodies. Humira worked some but not enough, and Entyvio did not work for me. My last colonoscopy at the end of October showed a really sick colon and if things don't improve with the Stelara I will likely have surgery next. After this colonoscopy I was hospitalized for a week to get IV steroids and have been on 60mg of Prednisone since then. I'm doing the Stelara every 8 weeks, and am also on Imuran and Bactrim.

I am doing quite a bit better than I was two months ago but I think it's mostly because of high dose steroids they gave me because I was in such a severe flare (was having very frequent BMs, blood, fatigue, pain, and urgency, all of which have at least improved a bit if not completely gone away). I feel a lot better because I was really doing bad back then, but definitely wouldn't say remission. It's almost more like I'm used the symptoms I do still have. Now I am mostly dealing with semi-solid BMs with mucus, cramping, and lower back pain. I just saw my doctor for my 2nd follow up after hospitalization and he wants me to start tapering off of the Prednisone a few days after my 1st Stelara injection (2nd total dose, first is an infusion) after which he thinks I will be feeling even better. If symptoms do start to come back after tapering we will have to reassess. I cannot wait to get off Prednisone as I am really starting to feel the side effects (moon face especially, darker hair growth, weird energy levels/irritability, maybe tooth sensitivity? could be unrelated) but am just hoping that I will continue to improve instead of going in the other direction... It is definitely scary! I worry that the steroids are what have helped me and that without them I will decline again. But I also don't want to stay on steroids! I am really hoping the Stelara is actually doing something.

My experience with insurance: The drug just got approved for Crohn's in November and that's when my GI prescribed it. He warned me that he would almost definitely have to go through a denial/appeal process, which he did. After being denied and then doing a peer review I was approved around Thanksgiving and got my first dose 12/7. The hospital system I use does not give the drug so I have to go to a different infusion center, but once I start the injections I can do them at home. When I first scheduled the infusion my co-pay would have been $1,800 for one infusion. They recommended I sign up for the Janssen CarePath Stelara Assistance Program, so I did that and supposedly my co-pay now will just be $5. It wasn't hard to get approved for that, but I also haven't gotten the bill yet so hopefully won't run into any problems.
01-09-2017, 07:33 PM   #109
ronroush7
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I hope the Stelara helps

01-09-2017, 08:31 PM   #110
my little penguin
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Ronroush7
Were you on the lower dose of Stelera (45 mg for psoriasis) or the Crohns dose (90 mg)?
They found for Crohns that the Stelera dose needs to be a lot higher
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01-09-2017, 08:39 PM   #111
ronroush7
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Not sure but I think it was the higher dose but it didn't help for either the Crohns or the psoriasis.

01-10-2017, 04:30 PM   #112
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Hello All, (RE: STELARA and NEW DRUG NAMED VIVLODEX)

For those of you who are still dealing with significant joint pain, I highly recommend Vivlodex Capsules. I am currently on the 5 mg daily dose and am amazed how well it works. This drug is the capsule form of Meloxicam (Anti Inflammatory),however, the drug has a 'high tech' release which is specific to Vivlodex solely. For me, it works far better than Prednisone and generic Meloxicam. It was initially given to me by my MD Internist as a 'sample' and within 2-3 the drug had taken away my pain. Based on the cost, (it now has a manufacturer coupon card that works with your own insurance, thus, greatly reducing the cost to a co-pay), I tried generic Meloxicam 15mg, along with Prednisone, however, it only worked for about a few days. When I returned to the Vivlodex 5mg capsule (stopping the Prednisone and Generic Meloxicam), my pain subsided in less than 2 days. My doctor tells me that the Vivlodex has a high tech delivery system. Sadly, many doctors including my GI doctor was not aware of this drug.

In closing, I have started Stelara and have received my initial induction 360 mg IV infusion. Accordingly, I will administer my first 90mg injection in less than 3 weeks. To date, the Stelara has not had the immediate relief Remicade gave me when I first initiated it back in 2013. Sadly, I built-up antibodies to Remicade and later reacted to Humira.

As you may know, Stelara attacks specifically IL 12 and IL 23 - and I pray this newly FDA approved drug kicks-in and ultimately changes many of our lives for the better.
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God Bless.
Napali Coast

CD: 1993
Current: Humira Induction August 2014 - Stopped due to reactions. Previous Remicade 400 mgs every 4 wks then 800 mgs every 4 wks - Built-up Antibodies in 2014

Events:
1993-Severe Blood Loss: Ileum-CD Diagnosis
1998-Sm Fissure-Nitroglcerin Cream
2007-Sm Bowel Blockage-No Surgery/NG Resolved
2013-Severe Blood Loss: Stomach-NSAID Caused
2013-Remicade-Clinical Remission

Current RX:
Prednisone Daily
Meloxicam Daily
B-12 2xMo. Injection
03-01-2017, 09:28 PM   #113
rrhood1
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Well, I've failed at Stelara. Saw my GI last week and the dermatologist this week. I think they're going to try to get me back on Remicade(my miracle drug) and the derm dr is getting me on Otezla - a biologic only for psoriasis - although he says they've been seeing Crohns patients having a better time on it as well as weight loss (wow, wouldn't that be nice instead of always packing on the pounds with prednisone).

We'll see what they say when the two of them do their conference call.
03-02-2017, 05:07 PM   #114
woops!
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I'm in my second week post infusion. So far the horrible night fevers have stopped & I have seen a slight decrease in blood in my stools. I still have to take lamotil every 6 hrs or it's horrible. Just wondering when everyone seen some significant improvement? Been flaring since November. Thanks
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03-06-2017, 08:35 AM   #115
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After a year on Stelara, my doctors felt it wasn't working after I had a Double Balloon Enterography and there was many new deep ulcers and continued diarrhea. This after having 2 1/2 feet OD small intestine removed last April. So, now I inject myself weekly with Metotrexate. I was told the pills would just come out and not do their job. I think this might be working, but I am also vigilantly watching my diet. It's only been 6 weeks and I have more good days than bad. So many meds have failed after a while, but I'm being positive. I've tried the usual Pentasa, Prednisone, Entocort, Humira, Entiviyo. All work for a time, but then just stop. I've not tried Remicade, but my doctor said it's the same makeup as the others and since they haven't worked it won't either. Good luck to you!
03-06-2017, 08:42 AM   #116
ronroush7
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I also want to say good luck to you.

03-28-2017, 02:26 PM   #117
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Hello, fellow crohnies. I am not new to this forum, was on many years ago but need a few questions as I am not crazy about being on drugs. I haven't been on any biologics in a few years. Humira was my last and didn't do any. I found that since I am now mild, I just saw a new GI as my old one retired. I was only on fLagyl for periodic flares which where controllable. Took t-3's when needed. My question is, would anyone go on another biologic drug if only in a mild stage. I am not crazy of that idea. This GI is leaving in july And won't be monitor me as us Canadians are hard to get any doctor. I am getting a colonoscopy on Thursday and depending on what he sees, should I go on Stalara...he was not happy I am not wanting to take it. I have had Crohns about 30 years. Most likely won't go on it. Just take a milder drug. Any opinions.
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