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12-19-2012, 07:20 PM   #121
Nikki72
 
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Join Date: Dec 2012
I just found out today that I get to start the trial next week. I can't imagine a better Christmas present if it works for me.
12-19-2012, 08:05 PM   #122
Tenacity
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Join Date: Jun 2012
Location: Houston, Texas

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Congratulations Nikki! I hope Sterlara works great for you as it has others It certainly would be the best Xmas present ever wouldn't it!

Why don't you pop over to the My Story Forum, and introduce yourself? We would love to meet you!
12-20-2012, 12:16 PM   #123
StephenBaird
 
Join Date: Dec 2012
I've tried Remicade and Humira. I've even tried Pig Whipworms. I currently have an Ileostomy. Options at this time are Tysabri, Stelara, and a bone-marrow transplant with chemo to restart the immune system. I feel like both Tysabri and Stelara will be like Humira and Remicade.
12-20-2012, 12:39 PM   #124
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
Stephen, have you heard of Low Dose Naltrexone?
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12-20-2012, 12:44 PM   #125
Tenacity
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Join Date: Jun 2012
Location: Houston, Texas

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Hi Stephen - are they offering you an autogulous or allogeinic (donor) transplant.

Also, if you are in remission, would they be able to reverse the ileostomy?
12-20-2012, 12:59 PM   #126
Lawyerboy
 
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Join Date: Aug 2012
Location: Amsterdam, Netherlands
Hi Stephen. I also did not respond to Remicade and Humira, but I seem to respond to Stelara. Chances are Stelara is going to work for you.
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Azathioprine, SCDiet
12-20-2012, 02:17 PM   #127
StephenBaird
 
Join Date: Dec 2012
David - I have never heard of Low Dose Naltrexone. I will look into it and ask my GI about it, thank you.

Tenacity - It is a trial in Philadelphia at the moment, it moves around to different universities for people ages 18-25 with moderate to severe Crohn's Disease. I don't remember all the details but I'm pretty sure it is an autogulous transplant. The ileostomy is indeed reversible, that was the plan when the procedure was originally done last August.

Lawyerboy - Thank you. I hope Stelara or Tysabri work.
12-20-2012, 02:49 PM   #128
Tenacity
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Join Date: Jun 2012
Location: Houston, Texas

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Stephen - Stelara seems to be a good choice and then you will have the sct to back you up. Not sure if you know, but we have an extensive discussion with past patients blogs in our treatment section about stem cell transplants. Lots of great information there.

Let us know if we can help you with anything. Are you on any particular diet?
12-20-2012, 04:50 PM   #129
StephenBaird
 
Join Date: Dec 2012
Tenacity - Thanks for the information, I'll check out the treatment section. I'm currently on no particular diet.
12-27-2012, 02:03 PM   #130
CrohnsHobo
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Join Date: Nov 2009
Location: San Diego, California
Got my approval from insurance and waiting for the drug now from Medco (and to find out how much of the cost my insurance will cover).

Just been on Imuran since August. Was not sick enough for the trial, so they sought approval for off label use and got it.

Hoping this works, have failed Remicade, Humira/Methotrxate, and Cimzia and had most of my colon removed earlier this year. Right now I actually feel pretty good, or at least good for me.

They are doing 90mg, then 90mg 2 weeks later, and then 90mg every 8 weeks in a shot I do myself.
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Diagnosed in 1996
Currently on: Nothing!
Colostomy surgery 4/24/12

Past Failed Treatments:
Prednisone
Remicade
Asacol/Lialda
6 MP
Cipro/Flagyl
Humira
Methotrexate
Cimzia
Azothiropine
Entyvio
Augmentin
Stelara
12-27-2012, 04:47 PM   #131
Tenacity
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Join Date: Jun 2012
Location: Houston, Texas

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Crohnshobo - are you going to try Sterlara now?
12-28-2012, 03:01 AM   #132
Lawyerboy
 
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Join Date: Aug 2012
Location: Amsterdam, Netherlands
Good luck crohnshobo. Stelara seems to kick in after a couple of weeks so don't expect it to work right away. The results of the latest trial are pretty encouraging though. I seem to react to stelara and remicade and humira never worked for me. Good luck!
01-30-2013, 02:02 PM   #133
Jer
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Join Date: Oct 2012
Location: CT

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Looks like this is my next try.......IF......my Doc can get it approved with my insurance.

Other than this, surgery seems to be my only option, which in my mind is NOT an option.



It's unfotunate that it's not even going to hit the FDA's desk till next year (2014) to get possible approval for Crohn's.
For now we get a sub-par theraputic dose off label IF our stingy ass insurance co. will allow it.
01-30-2013, 02:05 PM   #134
Linn
 
Join Date: Apr 2012
Hi everyone, just wanted to update on how i'm doing.

We have finally found a dose that might be helping me for real.

I have been using 45 mg q2weeks and now I'm down to 3mg of prednisone. I can eat most foods (with the exception of very very high fiber stuff) and haven't seen blood in weeks.

I think finding the pharmacokinetically favorable dose takes time, but is well worth the work. I feel better than I have in ages.

Best of luck to all those Stelara-users out there---try tinkering with your dose if you feel that its helping you--that can make all the difference!
01-30-2013, 03:49 PM   #135
Stephienc
 
Join Date: Dec 2012
Location: Cambridge, United Kingdom
Jer - I do hope you get a chance to go on the Stelara trial. Im now 24 weeks in and fingers crossed, its going really well. Docs very happy with progress and I feeling really good on it.
01-31-2013, 08:02 PM   #136
Jack2013
 
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Join Date: Jan 2013
Jer - I do hope you get a chance to go on the Stelara trial. Im now 24 weeks in and fingers crossed, its going really well. Docs very happy with progress and I feeling really good on it.
Good to hear this! I have had a reversible ileostomy since July and am about to do my 2nd tysabri infusion. Stelara would be my next option if the Tysabri fails. Just curious, do/did you have any fistulas? My problem is with abscesses and a fistula tract near my rectum...
02-05-2013, 02:05 PM   #137
LucyLoo
 
Join Date: Oct 2012
Location: Ireland
Hi all,

Im starting Stelara tomorrow! I have so far ''failed'' all other biologics, most recently Cimzia. I was just browsing through the previous posts and it seems my doseage is way off what everyone else is getting. I start with 90mg tomorrow, then 45mg weekly for three weeks, then 45mg fortnightly from then on, all going well. Does this seem ok? Stelara is not being used widely here in Ireland, my GI knows of only three patients on it all at a different hospital so Im a bit of a guinea pig! Just want to be sure Im getting the best start!!
Also, anybody thats taking it with Methotrexate, have you been able to stop the Mtx at any point as thats my main goal. Im currently taking 25mg/wk.
02-05-2013, 08:58 PM   #138
steve55
 
Join Date: Jul 2012
Location: New York
I have UnitedHealthcare and am looking to go on Stelera. So far they have rejected the claim. If anyone has specific advice on how to plead the case, like what studies to cite etc, that would be appreciated.
02-06-2013, 03:03 AM   #139
Stephienc
 
Join Date: Dec 2012
Location: Cambridge, United Kingdom
The study I am on is called Imuniti. What are their reasons for rejecting?
02-06-2013, 08:15 AM   #140
Jer
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The reason for non-approval is probably because this drug is non FDA approved for the treatment of Crohns Disease.

It's studies like the one you are on (Stephienc) are what the rest of us need to get the FDA approval..........considering it does help.




My doctor just recently got a patient approved for off-label use. He is going to try the same with me and hopefully it goes through AND it works for me.

I will update with any new info I get and see if I can find out the verbage he used IF successfull.
02-06-2013, 02:24 PM   #141
Jer
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Well, I just found out that it got approved. I'm not sure on the dosage yet and I'm not starting it quite yet either.

All I know is that it was approved.

It's nice to have another option in the pipeline, considering the current treatment isn't working.
02-06-2013, 03:29 PM   #142
Stephienc
 
Join Date: Dec 2012
Location: Cambridge, United Kingdom
Thats great news - Will be great to hear how you get on with it. Did you have to ask to be on the trial you mean?
02-06-2013, 03:33 PM   #143
Jer
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Thats great news - Will be great to hear how you get on with it. Did you have to ask to be on the trial you mean?
No trial or study. My doctor got me approved for off-label use.
02-14-2013, 05:58 PM   #144
Crohnie2003
 
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Join Date: Aug 2012
Location: los angeles, California
Just started part 2 of the Stelara study last night. In Dec I had my first infusion of possible med or placebo. We hope it was the placebo as I have had no change at all. Last night I received an infusion and an injection. One of which is the real deal, the other a placebo. Today I feel like I have a cold starting (runny nose, itch watery eyes, etc)...anyone else notice they felt like that after receiving the meds? I hope this works as I have mentioned before, this is one of my last options. I have not responded or I am allergic to 6MP, Remicade, Humira, Thalidomide, Methotrexate, prednisone, Asacol HD, pentasa, Cimzia. I tested positive for JC Virus, so Tysabri is out! I had a small bowel resection in July 2009 and we have already talked of another one. I am hoping I have as much luck as some of you on the Stelara. I will go back in 4 weeks for the injection and if it helps, will continue every 4 weeks :-) Happy Valentine's day everyone :-)

Last edited by Crohnie2003; 02-14-2013 at 05:58 PM. Reason: spelling
02-15-2013, 09:09 AM   #145
Stephienc
 
Join Date: Dec 2012
Location: Cambridge, United Kingdom
When i started phase two I developed a chest infection almost straight away which they still are not sure if it is related to the meds. Stick with it, I hope it works as well for you as it is doing for me - and continues to work!
02-23-2013, 09:44 AM   #146
dmarrs06
 
Join Date: Feb 2012
Location: El Dorado, Kansas

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I loved reading this post. I just had my first shot of stelara yesterday. I did get the headache and felt nauseaous for a little bit but it all did go away. I am the first patient at my GI's office to try stelara. I'm really hopeful that it will help but I'm also on presidsone which I've started to taper off from 35mg. I've tried remicade but after I had my daughter I had an allergic reaction. I then tried cimzia and humira as well as being on imuran and still didn't work for me. My GI finally sent me to the mayo clinic In MN where the GI dr suggested tysabri but I tested positive for the JC anti virus and couldn't take it so my next step was stelara. After going through all that I truly hope it does work for me becuase I would love to try for another child but this disease makes that so much more complicated!!
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On Imuran 250mg and Humira
02-23-2013, 10:49 AM   #147
Stephienc
 
Join Date: Dec 2012
Location: Cambridge, United Kingdom
Good luck, great news that they have put you on it. Was also on budesonide when I started the trial, tapered off and stopped taking in phase 2. Best of luck to you!
03-07-2013, 11:45 AM   #148
joshw2011
Senior Member
 
Join Date: Nov 2010
Location: Dayton, Ohio
I'm hopefully starting this soon and I had just one question, just something I'm curious about, not that it matters at all. Is the pain less than Humira, for those who have done both? From what I read in here I didn't see anything about it being painful, so that looks positive. It wasn't a big deal for Humira, just a nuisance at the time, but like I said it's just something I've been wondering about for a while now haha
__________________
Crohn's since December 2002

Total Colectomy with Ileostomy 1/26/12, 14cm rectum left

Current
Imuran 225 mg daily
Prednisone 17.5 mg daily, tapering
Entyvio every 8 weeks
03-07-2013, 11:50 AM   #149
kdgdi
 
Join Date: Jan 2011
Location: Troy, Michigan
Hi No more painful than any other injections.

I did Stelara from April 2012 to August 2012...no help for my crohn's.

Good luck to you!! Diane
03-07-2013, 01:17 PM   #150
joshw2011
Senior Member
 
Join Date: Nov 2010
Location: Dayton, Ohio
Thanks for the response! Did you do Humira in the past? Because what I mean is not about the actual needle, of course that's going to be a pricking feeling like all needles. The actual Humira medicine stung when it entered the body, it wasn't the needle.
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