Stelara work best with Pred, now it doesn't seem to help

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therearemiracles
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Date Joined Dec 2006
Total Posts : 3533
   Posted 5/4/2017 5:30 AM (GMT -7)   
Just an update as of 9/1/17 Stelara doesn't seem to be effective for me that i can tell. Still blood , diarrhea, urgency, accidents etc.... on to Chinese herbs. Just wanted to correct this post.I failed 6mp, humira, remicade, entyvio, 5-asa, pred, you name it!! I started Stelara on 3/14/17 I take my shot on 5/9/17 and since the infusion day in March, instantly all my aches and pains went away!! Every day since I truly have been happy!!! I only took Tylenol for my pain and some days I wanted to die before Stelara. I had arthritis pain as well. I had bad side effects from humira , then entyvio, remicade did nothing, but one hour infusion of Stelara I was brand new. I take herb lax at night to clean me out. It helps. If I miss a few days I look pregnant and feel backed up to my throat. I'm miserable. I'm still on prednisone 5-10mg a day. After next shot , I will be off pred.

U of M recommended Stelara , I'm so thankful, I just called their research department and was asking about getting in a study and I talk to a lady for a while and she said try this first before I enter a new study and I'm so glad I did!
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

Post Edited (therearemiracles) : 9/8/2017 6:00:15 AM (GMT-6)


notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15424
   Posted 5/4/2017 7:52 AM (GMT -7)   
Your IBD is in remission? No more frequency, blood, accidents? That's fantastic!!!!!
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 5/4/2017 7:56 AM (GMT -7)   
Oh no I can't say that, but it has helped!! I still have some blood and yes accidents but not nearly like before smile

Post Edited (therearemiracles) : 9/6/2017 10:32:51 AM (GMT-6)


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 472
   Posted 5/4/2017 11:53 AM (GMT -7)   
Glad you are getting some relief. I still have concerns with how loose they are with the term "remission" As i read more on each medication they are using reduction in symptoms and/or an improved CDAI score. As i read about Stelara, they stated they had no studies on IF there was any muscul healing (i.e. the ulcerations and scare tissue it causes) I think a lot more work has to be done with this part of it. in 25 yrs of this disease, I have never been without ulcerations and scar tissue except for about a 6 week period after my resection surgery.

SO, yes, i still take the meds and am in ENtyvio now as I need symptom relief as well. but I just do not like how they say remission when in many cases it is false.

I am sorry to be a Debbie downer, but i feel like crap these days, and trying to hold on until i get to Mayo clinic at May 15th. second entyvio infusion is Tuesday.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 5/4/2017 12:21 PM (GMT -7)   
I went to MAyo two years ago, sorry but I was not impressed at all! They told me the same thing except I had crohns and not UC even though I have ulcers and bleed every day,13 years now I guess. They are the one who said try entyvio and I did and was sick from it And the doc I worked with quit. Nice. I went to MN mayo . You're not a Debbie downer you're uust stating the facts, nothing wrong with that
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara and love it!!Took rafaximin for SIBO, worked awesome!

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 5/4/2017 12:37 PM (GMT -7)   
I went to MAyo two years ago, sorry but I was not impressed at all! They told me the same thing except I had crohns and not UC even though I have ulcers and bleed every day,13 years now I guess. They are the one who said try entyvio and I did and was sick from it And the doc I worked with quit. Nice. I went to MN mayo . You're not a Debbie downer you're just stating the facts, nothing wrong with that .
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara and love it!!Took rafaximin for SIBO, worked awesome!

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 472
   Posted 5/4/2017 1:37 PM (GMT -7)   
yikes! I will be at Mayo in MN on May 15th. Honestly I am not holding out much hope. I also feel pretty confident that I will need a second resection surgery soon. The other interesting thing is I am older, turning 55 in a few months. Many of these meds we take are not prescribed for the older that 65 group, especially if you have other chronic conditions like me, let along if medicare would even cover it. So, do i take my chances with the surgery as i have read a lot about many who have it a second time, seem to get a lot longer time before it comes back. maybe its the new meds helps so much more. IDK

I am trying to keep positive about Mayo. My GI wanted a second opinion on treatment given we are running out with just Entyvio and Stelara basically left to try.
surgeries: resection at terminal ilium, open heart surgery, infected lymphocele surgically removed, crainotomy to remove benign tumor; adominal hernia,

conditions: A-fib, High blood pressure, gout, crohn's, edema, cellulitis, other heart issues,, osteopenia

medications:
Entyvio, eliquis, verapamil , quinipril, labetalol, clorithidone, atorvastatin, alluporinol, vitamins

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1775
   Posted 5/4/2017 4:13 PM (GMT -7)   
Very glad you're having success with Stelera. Encouraging to anyone dealing with this disease that there are new therapies that will work.

It seems that Stelera is being received much more positively than Entyvio.

Are you on combination therapy with another Immuno?

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 5/4/2017 5:26 PM (GMT -7)   
No just pred smile
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara and love it!!Took rafaximin for SIBO, worked awesome!

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 903
   Posted 5/7/2017 6:46 AM (GMT -7)   
Stelara is my last resort to heal my fistulas/abscessing. I'm desperate for a miracle, Miracle! See my GI on Tues.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with fistulas, 2 setons placed and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly, 150mg Imuran
started Hyperbaric Oxygen on Dec 13, 2016---fistulas slowly closing (fingers crossed)

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 5/7/2017 11:45 AM (GMT -7)   
Hey TAM!
I am so happy the Stelara is working for you! I was dx UC in 2004 and just last week dx changed to Chron's Colitis. I am currently on Humira + Prednisone but can't seem to get off the pred. Maybe Stelara will be my next drug if doc decides Humira isn't cutting it. Hearing it worked for you is encouraging! How long did it takebefore you saw results?
37yr female, diagnosed and hospitalized 2004 with UC
Currently: Humira, Apriso, Uceris foam enema, Prednisone 40mg and tapering 5mg/week, Buproprion, Synthroid
Started Humira Feb. 4, 2017 now 40mg/week
Previously failed Remicaid. Previously used: Asacol, Lialda, Delzicol, Pentasa, Cortenema, Rowasa, Canasa, Entocort, and Uceris.
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE iron

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 5/7/2017 12:14 PM (GMT -7)   
I hope you guys have luck getting off prednisone with stelera, or even with that plus other meds if needed. I know in my case, I didn't try stelara, but I kind of wish I had been able to, that and xeljanz. I am happy I am done with it all, but it would have been interesting, from a research perspective, to see whether those drugs would have worked for a person like me, who was so non-responsive to all the biologics. I had zero response - just bad side effect, like crippling joint pain... I was over the whole process of starting and waiting so long to see if something worked, it never did - and with my history, the likelihood of a response was very low.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

DianaR
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/6/2017 9:09 AM (GMT -7)   
Hello all, I have had crohns for many years now, i had three resections two before I was diagnosed, i was diagnosed 2012, I feel like crap, joint pain, fatigue I have taken cimza, remicade humira and now sterelra I am going on my third dose and I have been feeling sick for the past week pain, diahrea, accidents while sleeping. I want to pull my hair. Who else is on stelera with negative outcome?

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 9/6/2017 9:56 AM (GMT -7)   
DianaR said...
Hello all, I have had crohns for many years now, i had three resections two before I was diagnosed, i was diagnosed 2012, I feel like crap, joint pain, fatigue I have taken cimza, remicade humira and now sterelra I am going on my third dose and I have been feeling sick for the past week pain, diahrea, accidents while sleeping. I want to pull my hair. Who else is on stelera with negative outcome?


Sorry to hear that. I had great results after the initial stelara infusion but they wore off after about 4 weeks. I just took my initial injection and it did not work as well as the infusion did. Still blood/urgency/cramps/explosive liquid D. So, I'm calling stelara a "failure" and I'm about to schedule surgery. Sucks--I responded so well at first and it got my hopes up.
**My biggest reason for surgery is I'm stuck at 22.5mg prednisone and been on it for 8 months.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Post Edited (Plucky) : 9/6/2017 10:59:39 AM (GMT-6)


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 9/6/2017 10:01 AM (GMT -7)   
I'm the same as plucky , will go to doc next month and get scoped and get his assessment about surgery. I just don't want a terrible report . Surgery in my mind is not an option. I've been very active lately and do a ton of stuff since being on health concerns supplements, better than Stelara ever was
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

DianaR
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/6/2017 1:21 PM (GMT -7)   
@miracle if you don't me asking what supplements are you taking?

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 9/6/2017 2:32 PM (GMT -7)   
Forumla H, Source Qi and pulsing with isatis cooling. NOW I'm working with Dr.shen office out of California, consultant over phone, they have made me another herb complex tea to try. I will give it a shot.

My issues with the herbs is , I can't say I know exactly what Heakth Concerns products to take and how much , I trial and error this all. I've read and read trying to guess what I should be taking.That's why, if Dr.Shen stuff helps , I will just stick with his mixture. There is something to these herbs , I never feel like I'm going to poop my pants, I have more energy,inflammation is way down in my rectum . That's using health concerns product. Like I said , I start a new mixture from Dr. Shen's office so I will report in a few days. Why would I change you ask smile I still have some bleeding, skinny stools. Better but not great.
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 903
   Posted 9/7/2017 3:31 PM (GMT -7)   
TAM----doing well on Stelara.. well bowel is....continue abscessing. Another horrible hospitalization 10 days ago. I'm going twice a day, completely normal but have urgency; which given my fistula issue is understandable. I'm not too worried about it as I'm not going anywhere these days. I have a penrose drain in my incision. Not fun. I go for my 3rd infusion next Wed. I hope that will clear up the abscessing. But so far, I'm doing much better on Stelara!!

Glad to hear you are making progress.....something is better than nothing.
Unsure if this is your area, but wondering if you new/heard anything about these folks?: I'm looking into going down to LA to get these stupid things fixed.....can't stand it anymore.

https://lapeerhealth.com/anal-fistulas/
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 9/7/2017 6:03 PM (GMT -7)   
It's nice to hear you're all having some luck.

Which surgeon does the procedure at La Peer? I really hope there is a good option for you to get things fixed up. That would be incredible, especially while your IBD is at bay. it would give you the opportunity to get your health back on track. My friend went to one of the GIs at that facility. it's a nice facility, but I would imagine it may be cheaper to go to the doctor directly and not through that particular center.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 9/8/2017 4:59 AM (GMT -7)   
No I haven't heard of them. so the Stelara is not helping the fistula heal right? UB Tough is such a great name for you, because you sure have been through it!!! I hope they can help you! Hugs!!!
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

Post Edited (therearemiracles) : 9/8/2017 6:02:31 AM (GMT-6)

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