Share Facebook


 
08-13-2014, 10:41 PM   #241
Chocolatechick
 
Chocolatechick's Avatar
 
Join Date: Jul 2014
Location: Port Moody, British Columbia

My Support Groups:
Hi everyone. Im new to this group and looking for people in stelara. I will be receiving my first injection next week and really hoping for improvement. Thank you all for sharing your stories. It seems that like every other drug everyone reacts very differently to it. I'm kinda freaked out about side effects etc but have no choice and need to give this a try!
08-14-2014, 11:26 PM   #242
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I have had two doses of Stelara. My doctor asked me if it was working. I said I wasn't sure.

2
__________________
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.
08-16-2014, 03:38 PM   #243
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
How long did it take before you noticed a difference after taking Stelara?

2
08-16-2014, 06:25 PM   #244
Chocolatechick
 
Chocolatechick's Avatar
 
Join Date: Jul 2014
Location: Port Moody, British Columbia

My Support Groups:
I'll be getting my first dose on Tuesday. Will let you know if I notice any difference
08-16-2014, 08:15 PM   #245
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Good luck Chocolatechick! I have been on since beginning of July and think it is working. No side effects that I am aware of. I am doing 90 mg injections and did three loading doses at 0,1,2 weeks and then every 8 weeks. Next dose will be mid-September.

Weaning off prednisone and still on Cipro for perianal disease, so hopefully will be able to get off both of those as well.

My insurance would not pay as it is not approved for Crohn's in Canada, so I am getting it through Janssen for now.
__________________
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
08-16-2014, 10:12 PM   #246
Chocolatechick
 
Chocolatechick's Avatar
 
Join Date: Jul 2014
Location: Port Moody, British Columbia

My Support Groups:
Hil lgpcarter!
Our stories sound very similar! Sounds like my dose will be the same as yours. I also live in Canada. Trying to get my extended health to cover it but if not I am covered under compassion care through the drug company. I am also weening off of prednisone the devil drug. At 25 mg a day and want to be done but heard it's dangerous to ween too fast. I also had 10 years of remission The only drug I've ever done for crohns besides prednisone is salofalk which I took for 20 years after bowel resection in 1991 I'm so happy to hear you think the stelara is working! My fingers are crossed. My biggest issue is I literally have NO TIME to get to a bathroom!
08-18-2014, 02:18 PM   #247
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Very similar! I have issues with urgency and continence, too, but slowly getting better and might also have to do with setons/fistulas.

There is a support group for Stelara that you might want to join: http://www.crohnsforum.com/showthread.php?t=63955
08-18-2014, 02:19 PM   #248
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
How long did it take before you noticed a difference after taking Stelara?

2
Only a week or so for me, I think. Definitely had some improvement by the time I did the third loading dose.
08-18-2014, 02:55 PM   #249
sir.clausin
Senior Member
 
sir.clausin's Avatar
 
Join Date: Jan 2012
I "like" the side effects...no big deal...

STELARA® can make you more likely to get infections or make an infection that you have worse. People who have a genetic problem where the body does not make any of the proteins interleukin 12 (IL-12)Proteins that increase the growth and function of white blood cells, which are found in your immune system. and interleukin 23 (IL-23)Proteins that increase the growth and function of white blood cells, which are found in your immune system. are at a higher risk for certain serious infections that can spread throughout the body and cause death. It is not known if people who take STELARA® will get any of these infections because of the effects of STELARA® on these proteins.

Cancers
STELARA® may decrease the activity of your immune systemA system inside the body that protects against germs and infections. and increase your risk for certain types of cancer. Tell your doctor if you have ever had any type of cancer. Some people who had risk factors for skin cancer developed certain types of skin cancers while receiving STELARA®. Tell your doctor if you have any new skin growths.

Reversible posterior leukoencephalopathy syndrome (RPLS)
RPLS is a rare condition that affects the brain and can cause death. The cause of RPLS is not known. If RPLS is found early and treated, most people recover. Tell your doctor right away if you have any new or worsening medical problems including: headache, seizures,
confusion, and vision problems.
---

It´s nothing new to those who take humira and remicade I understand, but hopefully the SSI-treatment will be as effective with side effects like: red spot on injection site.

Scary shit that we take.
08-18-2014, 03:17 PM   #250
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
Scary shit, indeed. And I have probably become too cavalier about the side effects, but Stelara is my last chance before major surgery, likely a permanent ostomy, and I would like to avoid that for now, if possible.

I am really hoping for good results from the SSI trial. I had thought about participating, but went for Stelara instead.
07-29-2015, 08:11 AM   #251
hopeemch
 
Join Date: Jul 2015
Location: Littleton, North Carolina
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
Raechel, I've been on Stelara for three years for treatment of psoriasis. It is a miracle drug because after the first six months psoriasis gone. I also have Crohn's and began to notice improvement with that as well. I found out that it was being considered for treatment of Crohn's so I've been killing two birds with one stone. But it is a very expensive drug. I'm on a maintenance dose of two shots a year. The manufacturer gives private insurance patients a big break but not medicare patients. I've been unable to take any of the other major drugs for Crohn's because of life-threatening reactions but since Stelara works differently my system has accepted it without any side effects whatsoever. I'm healthier now than I've ever been in years.
08-30-2015, 12:02 PM   #252
Mariecrohn
 
Join Date: Aug 2015
Location: Quebec, Quebec
Hi there
I've just started stelara a month ago.

4 loading doses in 4 weeks, 90mg per 8 week after that.

I've failed remicade, i'm still on Methotrexate 25mg per week.

Best blood test result in a while. I think we've finally found something that is working for me! I'll see my gastro on Thursday.

I was wondering, long term speaking, did anyone has to get their injection more often? Like when I was on remicade at the end I had double dose (10mg/kg) every 4 weeks. I'm kind of worried this will happen with stelara too...

And it's not like if we have full of other option after this one...

Thanks
08-30-2015, 09:23 PM   #253
hopeemch
 
Join Date: Jul 2015
Location: Littleton, North Carolina
Leave it to Canada to provide Stelara for Crohn's Disease. Still not approved for CD in U.S. just psoriasis. Since I've had so many reactions to everything else I limit my Stelara shots to two a year rather than try for more then have a reaction that keeps me from using it at all. I was on remicade for five infusions before I had anaphylaxis and had to stop it and all the other biologics in that family. Can't take anything in the steroid family either so Stelara is it and I'm proceeding with caution. Actually I'm waiting till fecal transplant is approved for Crohn's and the delivery system is nothing more than a pill. That is the most exciting research and hope for anyone with IBD.
08-30-2015, 09:57 PM   #254
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
hopeemch, I suggest looking at the treatment option in my signature.
__________________
It's good to be back
08-31-2015, 07:17 AM   #255
hopeemch
 
Join Date: Jul 2015
Location: Littleton, North Carolina
Thanks for the info David. I'm not in a position to take part in a trial but it is exciting news. I'm also excited about the prospect of fecal transplant being approved for all IBD including Crohn's and the delivery system becoming nothing more than taking a pill. It's looking like this may come to pass in the next couple years.
09-03-2015, 10:09 PM   #256
Greeko
 
Greeko's Avatar
 
Join Date: Sep 2015
Location: Vancouver, British Columbia
Stelara helped me , but my GI decided I should try Entyvio... big mistake I feel a lot worse now than I ever did almost comparable to when I was first ill and diagnosed 15 years ago.
09-04-2015, 07:26 AM   #257
hopeemch
 
Join Date: Jul 2015
Location: Littleton, North Carolina
Does Entyvio work in the same way as Stelara? Or is it more in the Embrel, Humira family of biologics. Do you know?
09-06-2015, 11:05 AM   #258
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Thanks for the info David. I'm not in a position to take part in a trial but it is exciting news. I'm also excited about the prospect of fecal transplant being approved for all IBD including Crohn's and the delivery system becoming nothing more than taking a pill. It's looking like this may come to pass in the next couple years.
I'm sorry to hear you're unable to. I hope you're able to get things under control soon!
09-06-2015, 11:32 PM   #259
Gary
 
Gary's Avatar
 
Join Date: Aug 2011
Location: Canada

My Support Groups:
Hi,
I haven't been on this thread in a while. Thought I would update...
Colonoscopy showed stelara wasn't working for me. My doc put me on Entyvio. I'm Not sure Entyvio's doin it for me either. Site Specific Immunomodulator (SSI) sound's promising. It's interesting that there's always something new coming out. Something's got to work. Eventually, Right?
Good luck to all those on stelara.
Gary
10-26-2015, 03:49 PM   #260
Fernando1
 
Join Date: Mar 2015
Back in 2006 I was on the Crohns clinical trial for CNTO 1275 which was the trial name for the Centacor company for Stelara. On the first four weeks I received 45 mg doses for 4 injections. By injection 3 my diarrheah stopped, bloating stopped and felt much better. Then the next 4 weeks no injections at all, then another round of 4 injections with the symptoms stopping again on this second round. All of this took place in a 3 month period. They were very excited about these results, I was the first person in California in this trial which was followed by more patients on this trial.

A few years later the Stelara brand name came out but only available for psoriasis. The competition with TNF drugs was fierce and Stelara remained as a psoriasis drug. I went on Humira for 4 years and it stopped working, I have been on Entyvio all of this year, I am on my 6 infusion and it is hardly working. Now my GI wants me to try Stelara as an off-label use but it requires special recommendations from a GI researcher that I will see soon. Then the struggle with insurance authorization will begin.

The effort in the clinical trial was extensive: there were weekly blood tests and monitoring of blood pressure, temperature and so on. They built a paper file on me that was 2 inches thick. There was special effort for any bad side effects that this big dosage may be causing(as you know maintenance Stelara injection is once every two months), and the monitoring of a success with Crohns.

Me, as well as you all, want to try Stelara after the other drugs have failed. The insurance company has other goals: they need to spend major amounts of money for each patient, they want to make sure that what they authorize has been tried by hundreds if not thousands of patients before and been successful. In my case with Humira they must have spent $80,000 and now with Entyvio they would have spent $30,000, and this cost is PER YEAR, just for me alone. The off-label use for Stelara is scattered throughout the country is hardly coordinated and the data gathered is diffused among the doctors.

What is needed for Stelara is a full clinical trial program for Crohns. After all these years of thousands of patients using TNF drugs and now Entyvio there is an emerging market of failures like me that need something new. The office I go to has 4 GIs, all together 15 patients on Entyvio, for 10 it is working, for 5 (like me) it is not. So there will be enough of "what is new to try" that will make Stelara a serious contender.

Last edited by Fernando1; 10-26-2015 at 05:10 PM.
10-26-2015, 06:13 PM   #261
hopeemch
 
Join Date: Jul 2015
Location: Littleton, North Carolina
Your experience with Stelara is so interesting. I was just so lucky that I did have advanced psoriasis and was prescribed Stelara then happened to notice what a positive effect it was having on my CD. My psoriasis is gone and it was covering about 90% of my body when I went on it in 2012. I have been on a maintenance dose of Stelara for the past 18 months or so and it still helps with my CD. I take the minimum dose because I am prone to anaphylaxis which has prevented me from using any of the other biologics like Humira and Embrel and any steroids. Stelara works differently which explains why I am able to tolerate it but I don't want to press my luck so take as little as possible. As you know Stelara is extremely expensive --$2800 co-pay per shot for Medicare or Medicare Advantage insured. Only $10 per shot for private insured. My dermatologist feels this is outrageous on the part of the manufacturer so he's been giving me my two shots maintenance dose a year for free. The manufacturer apparently has no problem giving out samples to doctors and my dermatologist is comfortable with doing this and knowing he is helping me kill two birds with one stone. Not too many physicians out there who care enough to go out of their way to help. I am so lucky. I pray every day that my luck will hold.
10-27-2015, 03:45 PM   #262
Fernando1
 
Join Date: Mar 2015
I am on Medicare United Health Plan. They have a catastrophic ceiling of $4500 per year which they covered for Entyvio which by the end of the year will be $30,000 to which I paid $4500 for the year. I am hoping that if I get approved that the same will apply for Stelara. However, the Crohns usage is off-label use, I wonder if the catastrophic plan still applies.

Stelara definitely worked for me back then, but it was 8 shots within 3 months which was a massive hammer to this pernicious disease.

We'll see !

http://www.everydayhealth.com/crohns...s-disease.aspx

http://www.ccfa.org/news/stelara.html

http://www.reuters.com/article/2015/...0SD1DS20151019

ibdnewstoday.com/2015/10/22/stelara-ustekinumab-for-moderate-to-severe-crohns-disease-demonstrates-significant-symptom-improvement-in-phase-iii-study-results/

Last edited by Fernando1; 10-27-2015 at 05:22 PM.
02-03-2016, 12:49 AM   #263
Cacleoa7
 
Join Date: Oct 2014

My Support Groups:
hopeemch, I suggest looking at the treatment option in my signature.
David,

I'm a 41 year old woman with severe crohns and only 180 cm of bowel left. I am desperate for something to help get my crohns under control. I have had major reactions to all TNF's. Really don't want to have to try Stellara. Wondered what you meant by above quote because I couldn't see your signature line. Could you email me, as I am not usually on this forum. I need to get better so badly, I have five kids and a wonderful husband. Thank you for any help!!
02-03-2016, 12:50 AM   #264
Cacleoa7
 
Join Date: Oct 2014

My Support Groups:
My email is [email protected]
02-03-2016, 02:13 AM   #265
vtfamily
Senior Member
 
vtfamily's Avatar
 
Join Date: Mar 2013
Location: Palmdale, California

My Support Groups:
It's been awhile since I've touched base...

Gus is still doing very well on the Stelara. I can't believe it has been almost three years now! What a difference. Three years of living with the disease under control...no pain...no hospitals...healthy...active...like a "normal" teen.

I know how difficult the struggle is to find something, anything to control the disease and manage the pain. Whether it is Stelara or something else, my hope for each of you is that you will find "the one that works" for you.

Blessings and good wishes to all.
Cheryl VT
02-03-2016, 02:15 AM   #266
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
It's been awhile since I've touched base...

Gus is still doing very well on the Stelara. I can't believe it has been almost three years now! What a difference. Three years of living with the disease under control...no pain...no hospitals...healthy...active...like a "normal" teen.

I know how difficult the struggle is to find something, anything to control the disease and manage the pain. Whether it is Stelara or something else, my hope for each of you is that you will find "the one that works" for you.

Blessings and good wishes to all.
Cheryl VT
Same to hpu

03-07-2016, 09:49 PM   #267
jonique
Senior Member
 
jonique's Avatar
 
Join Date: Oct 2012
Location: Vancouver, British Columbia

My Support Groups:
It's been awhile since I've touched base...

Gus is still doing very well on the Stelara. I can't believe it has been almost three years now! What a difference. Three years of living with the disease under control...no pain...no hospitals...healthy...active...like a "normal" teen.

I know how difficult the struggle is to find something, anything to control the disease and manage the pain. Whether it is Stelara or something else, my hope for each of you is that you will find "the one that works" for you.

Blessings and good wishes to all.
Cheryl VT
Hi Cheryl, I might be starting Stelara after many failed TNF. does it help with the arthritis?
__________________
Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stelara, Cimzia, Simponi, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
03-07-2016, 10:49 PM   #268
vtfamily
Senior Member
 
vtfamily's Avatar
 
Join Date: Mar 2013
Location: Palmdale, California

My Support Groups:
Gus continues to thrive on Stelara. He never had a big problem with his joints, but has had NO complaints since being on Stelara...even with a lot of extra physical activity added to his routine.

Best Wishes,
Cheryl VT
03-08-2016, 01:00 AM   #269
Greeko
 
Greeko's Avatar
 
Join Date: Sep 2015
Location: Vancouver, British Columbia
I'm back on Stelara after spending 7 months on Entyvio... that drug did nothing for me.. and I feel it made me worse...anyways since being back on Stelara for 2 weeks ... I've noticed more control of my bowel movements. I'm now going 2 to 5 times compared to 20 to 30 times a day. My only issue right now is that I still see blood.
03-08-2016, 01:05 AM   #270
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I'm back on Stelara after spending 7 months on Entyvio... that drug did nothing for me.. and I feel it made me worse...anyways since being back on Stelara for 2 weeks ... I've noticed more control of my bowel movements. I'm now going 2 to 5 times compared to 20 to 30 times a day. My only issue right now is that I still see blood.
If you haven't already, contact your doctor about the blood.

Reply

Thread Tools


All times are GMT -5. The time now is 04:32 PM.
Copyright 2006-2017 Crohnsforum.com