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


 
05-28-2014, 10:51 PM   #1
theOcean
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Stelara Support Group

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A support group for those who are being treated with Stelara/Ustekinumab.

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05-28-2014, 11:43 PM   #2
ronroush7
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Is anyone else on Stelara for Crohn's? My doctor started me a week ago after I had a reaction with Remicade. What are your experiences with Stelara? Thanks.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-30-2014, 07:16 AM   #3
lgpcarter
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I'll be starting soon, I hope. Stopped Simponi about three weeks ago and just in a washout period before my GI is comfortable starting the Stelara due to infection risks. I am also on 20 mg of prednisone at the moment. Could be another 7 weeks before I get the Stelara. Have an appointment on Monday and hoping he will move that up.

Anyone switched from one biologic to another quicker than 10 weeks in between?
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
05-30-2014, 11:50 AM   #4
ronroush7
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I started Stelara last week. Before that, it was December when I had my last biologic.

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05-31-2014, 10:43 PM   #5
AZMOM
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My daughter started Thursday (3 days ago). Due to neurological complications with TNF blocker, this is our first biologic since 2009.

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
05-31-2014, 11:35 PM   #6
ronroush7
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I wish her the best with the Stelara.

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06-01-2014, 01:04 PM   #7
Keedan
 
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I started in Feb and am finally seeing some results from something. Went thru Pred/Imuran/Remicade and nothing unless I was on really high Pred doses. Not at 100% yet but its made a major difference. Having some issues with sore joints and pain though and searching around a bit to see if there is a connection. Also on Imuran now so could be that.
Cheers.
06-01-2014, 02:04 PM   #8
theOcean
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The joint pain is more likely from your IBD, but as it gets under control that should go away. Great to hear the Stelara is helping you!

With Imuran you should watch out for nerve pain, and report to your GI if you get it.
06-01-2014, 02:08 PM   #9
Keedan
 
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Hi, I'm dubious about it being CD related. Historically I've never seen an issue with it and although things change constantly, my gut has always be the main source of issue for me and would only see periphery symptoms when things got bad. So to feel great everywhere but my joints would be very out of character. Have done some digging and am starting to wonder if its withdrawal from the Pred which I tapered off of in Jan as a few people have reported identical symptoms elsewhere on the forum.
Cheers
06-01-2014, 03:40 PM   #10
ronroush7
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I started in Feb and am finally seeing some results from something. Went thru Pred/Imuran/Remicade and nothing unless I was on really high Pred doses. Not at 100% yet but its made a major difference. Having some issues with sore joints and pain though and searching around a bit to see if there is a connection. Also on Imuran now so could be that.
Cheers.
How many times have you had it injected. I was told I would get it at 0 weeks, then 4 weeks and after that it would be every twelve weeks.

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06-01-2014, 05:08 PM   #11
Keedan
 
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I injected once a week for three weeks for loading doses and then am to do every 8 thereafter. Not actually sure what size the doses were and have now tossed the packaging so can't check till the next one is sent to me. I've only taken the first dose after the loading doses so I'm pretty early into it. Within about five days of the first dose I started to get the sense things were improving and then by week two or so I was feeling pretty good. Hope it lasts.
06-01-2014, 05:51 PM   #12
ronroush7
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Me too.

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06-02-2014, 04:04 PM   #13
lgpcarter
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I'm starting at the beginning of July. Can anyone who is on Stelara comment on if it ihas helped fistulas?
06-05-2014, 03:10 AM   #14
Crohn2357
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For people who are going to start Stelara or who are using it now, are you using immunosuppressant(aza, 6mp, mtx) with it or are you on monotherapy?
06-05-2014, 04:55 AM   #15
AZMOM
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Claire is also on MTX.
06-05-2014, 03:39 PM   #16
ronroush7
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I am also on Imuran.

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07-02-2014, 10:27 AM   #17
Crohn2357
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New Stelara users, any uptades?
07-02-2014, 10:43 AM   #18
AZMOM
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Crohn2357 - No new news (say that three times fast ). We did the second loading dose at week 4 and it was uneventful. I can't really say what it is doing for GI tract since we are doing EN but we have starting weaning the Uceris. He says no MTX weaning until we are all the way off the Uceris and IF she's in remission. Her arthritis; however, continues to flare. The Rheumatologist (and of course the GI and us) is hopeful that the Stelara will make a difference in that as well.

I think it was Maya142 doc (they aren't on Stelara yet but are looking at in) that said it may take up to six months for the Stelara to be fully effective. Anyone else have a different timeline?

J.
07-02-2014, 01:43 PM   #19
Maya142
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We were by my daughter's rheumatologist that Stelara does take a little longer - 24 weeks or so. However, that's for psoriatic arthritis and the dosing for that is a bit different (45mg every 12 weeks) than what seems to be used for IBD (seems like it's usually ever 8 weeks for IBD?).
My daughter is still on Remicade though, so we have no experience with Stelara (yet!!).
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-02-2014, 02:55 PM   #20
lgpcarter
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I start this week. Can't remember exact loading schedule but I think it is 0,1,2 and 4 weeks. Fingers crossed as this is my last drug option.
07-08-2014, 11:58 AM   #21
lgpcarter
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Having the nurse visit tonight to help me inject my first dose. Forgot to ask her when I spoke to her last night if I should take it out of the fridge 20 mins before like with Simponi and Humira?

Loading doses are 0,1, and 2 weeks and then every 8 after that.
07-08-2014, 12:23 PM   #22
AZMOM
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We were not advised of "letting it sit out" and the instructions say to keep in refrigerator. So, Claire's getting is straight out of the fridge.

Your post made me wonder and since I work at a hospital, I combed the "for healthcare professionals" website to see if it said anything about leaving it out. I couldn't find anything there either.

Please post if you here/read differently!

J.
07-09-2014, 08:46 PM   #23
lgpcarter
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The nurse advised to bring it to room temperature by taking it out of fridge 20-30 mins before (same advice as Humira and Simponi). More about stinging/burning with injection than anything else, I think.

First one went well - a little tender around injection site for a few hours last night but no other side effects so far.
07-10-2014, 05:11 PM   #24
ronroush7
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I live in Virginia near Washington, DC. Does anyone know of any home health service that could come to give me the injection? Thanks in advance.

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07-20-2014, 06:23 AM   #25
lgpcarter
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Mine was arranged through Janssen's BioAdvance program. Looks like it is only a Canadian thing, but you might want to check it out and see if there is American equivalent?

I live in Virginia near Washington, DC. Does anyone know of any home health service that could come to give me the injection? Thanks in advance.

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07-20-2014, 06:25 AM   #26
lgpcarter
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Two loading doses under my belt now, and one more on Tuesday before I switch to maintenance dosing of 90 mg every 8 weeks.

Cautiously optimistic that it is helping, but proof will be in the pudding as I try to taper down the pred below 25 mg. BMs are definitely firmer and urgency is a bit less.

Nurse administered first dose, I was able to do the second one, so I am on my own now and feeling pretty proud that I was able to do my own injection. It was a lot easier than I expected.
07-20-2014, 08:03 AM   #27
ronroush7
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Two under my belt.

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07-26-2014, 03:32 PM   #28
ronroush7
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This is my third biologic. I just read on a Facebook group for people with Crohn's that a third TNF won't work. Is that true?

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07-28-2014, 10:36 AM   #29
lgpcarter
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The anti-TNFs do tend to lose effectiveness, yes, but Stelara is not an anti-TNF, is it?
07-28-2014, 12:34 PM   #30
ronroush7
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I don't know.

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