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


 
10-23-2014, 11:48 AM   #61
mugsymagoos
 
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My daughter has always been on 90mg every 8 weeks and is doing great!
10-23-2014, 11:59 AM   #62
ronroush7
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That is great.

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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.
10-25-2014, 01:11 PM   #63
lgpcarter
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That's what I've been doing since starting maintenance dosing. Seems to be working well for me. Still a bit of a guessing game for IBD dosing.
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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
11-27-2014, 10:50 PM   #64
ronroush7
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I had my first dose at the 90 Mg. level about a week ago. I have been having cramps today.

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12-10-2014, 10:06 PM   #65
ronroush7
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I have had two accidents lately. Is the Stelara failing?

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12-10-2014, 10:15 PM   #66
lgpcarter
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I still have accidents. Worse now, since my fistulotomy and setons. I think the Stelara is still working for me, but there's only so much I can expect at this point.

Last time I saw my GI, he did say it can take up to a year to fully heal the gut.

I have shortened my dosing to every 7 weeks. Next dose is due Christmas Day, so will see how next week and the week after go.
01-14-2015, 08:16 AM   #67
Cotsy2
 
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Was just prescribe Stelera today. Had never heard of it before so happy to see an active thread about it on here.

A bit of background, I was diagnosed with UC at 18, struggled with it for a few years, in and out of remission, tried a lot of meds including pentasa, imuran, pred and a few doses of infliximab/remicade but at about 21 "opted" for a colectomy and reversal j-pouch. Pouch was great for 5+ years but then about 18 months ago developed perianal fistulae, 1 involving the urethra (I'm a guy, it seems a less common occurrence in males) which lead to having a catheter for about 8 months (not fun..). 1 seton put in place also.

For the 1st period of treatment it was mainly antibiotics (flagyl, cipro) but the fistula didn't close at all so I went. At this stage I had never been diagnosed with Crohn's so I went to another gastro to get another opinion, (surgeons only really think surgical solutions).

Did some bloods and my CRP level was high, sign of inflammation so I started Humira and imuran and (also rifaxamin for a period) and after a few months the fistula involving the urethra closed over, CRP level came down and MRIs showed up good so bye bye catheter, hallelujah.

All good for about 4 months but then the same fistula hit back, tried upping the Humira to weekly and upping the imuran dose but no joy. Just had bloods done again and CRP is back up again at 21. So we have opted to give stelera a try.

I'll let you know how it goes for me.
01-14-2015, 08:44 AM   #68
lgpcarter
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Hope it works! Definitely helping me but still struggling with fistulas a bit. They are much better but still draining.
01-14-2015, 09:06 AM   #69
AZMOM
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Unforuntately Claire's calprotectin #s have doubled since last dose and her arthritis has flared as well. So frustrating. Her dose is increased to 60mg every 8 weeks. Fingers crossed.
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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
02-28-2015, 09:05 PM   #70
lgpcarter
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How is everyone doing? Is it working for you Cotsy2? 8 months in and things seem to be going well with me. Struggling with some rectal scar tissue now (I poo ribbons! ) and the fistulas are still a bit of a problem, but things are definitely better.
03-01-2015, 07:24 AM   #71
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Ive been on it for 8 weeks now. My 4th shot is due today, I did 3 90mg injections evey 2 weeks now stepping down to the maintenance of 45mg monthly.

Had some bloods done recently and my crp has come down to close to normal, so I guess that is good but no improvements with the fistula I'm afraid, still very much there.

Went to see my gastro this week and we've decided that I should get it checked out, so I'll go back to see the c/r surgeon and go under g.a. and he can try and see what's going on, its been close to a year since I was last knocked out for a look so I'm happy enough to do it.

Unless i get lucky it Feels like I'm going down the road of having to consider an ileostomy.
04-15-2015, 08:42 PM   #72
lgpcarter
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Thought I would check in. CRP is finally coming down, and I feel better than I have in a couple of years. Fistulas still an issue, but they have been much worse, and I can cope with where they are at now.
04-17-2015, 11:45 AM   #73
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Stelara is not an anti_TNF, It blocks two proteins called IL-12 and IL-23 that may play a role in plaque psoriasis. This may slow down how fast skin cells are made and may reduce inflammation. It is a "sort of similar" approach as to how Entivio works, not an anti_TNF.

I was part of the initial trials for STelara for Crohns back in 2005. Received 8 injections and took me into remission. The manufacturer decide to market it as a psoriasis medication and have not used it for Crohns. Wish there were more prescribed uses for Crohns since it worked for me.
05-27-2015, 10:03 AM   #74
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After failing pretty much all the meds under the sun, including Remicade, Humira, Cimzia, Simponi, combos and not combo, I had my first Stelara injection yesterday.

As my flare is quite severe and lasts since September, I must say I am expecting a lot from Stelara. Fingers crossed it works and quickly. I have 90 mg for the weeks 0, 1, 2 then 90 mg every 8 weeks.

The injection is the least painful I have experimented and anyway they barely give you the choice: the nurse comes every time for the injection. I wont complain as I am not a huge fan of needles.

Ill keep you updated about how it goes with this treatment!

Also, if there are people on it here, Id be really interested to have your review about it!
06-12-2015, 02:37 PM   #75
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I had my 3 dose yesterday. The next one will be in 8 weeks. So far I don't see improvment bet fingers crossed it will help soon!

I hope it works for people in this group!!
06-23-2015, 01:44 PM   #76
AZMOM
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Update - we are 1 yr on Stelara in May. My daughter is 12. We just had the BEST labs we have ever had and she is FINALLY feeling great. Honestly, the best she's been since diagnosis a year ago. Stelara is slow to get going and the road has been rocky, but I'm glad we stuck with it!
06-23-2015, 08:13 PM   #77
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AZMOM, how long did it take to see any improvements? I had my 3 first doses and so far as soon as we try to tap the pred, my symtoms get worse! It's been 5 weeks since I began. It's been my worst weekend in a while, lots of blood clots and BM but it's hard to lose hope because next step is surgery.
06-24-2015, 06:04 AM   #78
lgpcarter
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I think it took me another dose or so after the three loading.
06-25-2015, 08:52 AM   #79
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Okay! Well I'll hold on a bit more I guess
06-26-2015, 05:25 AM   #80
lgpcarter
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Looks like the end of the Stelara road for me! Been on it for a year, but just out of the hospital with a partial small bowel obstruction due to inflammation.

The Stelara has really helped and I've actually been feeling quite good, with pretty normal stools and only 2-3 BMs a day. Still fairly active fistulas, mind you.

CRP was hovering in low 20s/high teens for a few months, though and I guess now we know why. Hoping to see my doctor next week to form a plan which looks like Entyvio at this point. Surgery only other option and I suspect they would recommend ileostomy for me because of fistulas and I am not sure I am ready for that.

Overall, Stelara was good for me for a year - no side effects, miles better to inject than Humira and I have felt pretty well. Best of luck to you all on it.
06-26-2015, 06:49 AM   #81
boussole
 
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It's always too bad when a treatment stops working. I'm sorry it can't help you anymore, lgpcarter.

But Entivyo seems to be great for many people, fingers crossed it will work for you and you can avoid ileostomy..!
06-26-2015, 07:54 AM   #82
AZMOM
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It took a dose increase for us to see the difference. We've had three doses at the increased level. She has been on Stelara for 13 months. Hang in there!
06-26-2015, 06:00 PM   #83
lgpcarter
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Thanks. I increased intervals a while ago, up to 90mg every 7 weeks instead of 8. That maybe helped a bit, but obviously not enough.
08-18-2015, 09:26 AM   #84
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Anyone on Stelara AND having Arthritis (Crohn's related or independent)?
I'm having peripheral Arthritis but also Spondylitis along with Crohn's and my doctor's don't know whether to try Stelara if I fail the Anti-TNF or not.
As far as I understand it seems to depend on the fact whether Crohn's is the underlying trigger for arthritis or not...
Any experience?
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-21-2015, 08:34 AM   #85
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waiting approval from the insurance to start stelara. the Dr chose this over envytio because of the remicade induced psoriasis.
09-20-2015, 09:32 AM   #86
Cotsy2
 
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Wow, it's been 6 months since I last posted on this thread. I guess I've been distracted by actually feeling good and not spending my time google for treatments and stories.

My symptoms stopped back in about May when I had been on 45 mg of Stelara p/month, the last 4 months have been the best I've been in years, been really active, back playing football and even managed to gain a few kilos. My current dose of Stelara is 90mg per month as this is what my consultant thinks is the most proven successful in his experience.
10-19-2015, 08:16 PM   #87
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Hey all, I just wanted to post a message of encouragement. I was on Stelara for about 9 month last year and I think it really began to work around month 6-8. I was putting on weight and number of BMs decreased. Sadly my insurance stopped paying for it because they would only approve the amount of doses allowed for psoriasis and I couldn't afford to continue. I'm still doing better than I was before it, so if you have to opportunity to try it, I would recommend it. Also, I don't remember any significant side effects (aside from irritation around injection). I wish you all the best luck!
12-16-2015, 01:10 AM   #88
ronroush7
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It is also supposed to be good for psoriasis but I haven't seen any change
12-21-2015, 12:32 PM   #89
ronroush7
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The other day, someone had asked me that once I found out the dosage of Stelars to post it here. It is ninety milligrams per every one milliliter.
01-04-2016, 07:27 PM   #90
ronroush7
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I am still having the ugly spots from the psoriasis. How hard is it to get changed over to another biologic!
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