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10-19-2012, 08:11 AM   #91
raechel
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Lawyerboy- I can sympathize. It is so frustrating to have tests not match what you are feeling. I had some tests show improvement with the Stelara, but wasn't feeling better and it was driving me nuts. I wanted to feel excited that things appeared to be improving, but without feeling relief of symptoms I was just confused. My latest test showed that while the Stelara is helping some affected areas, others are worsening. The good news is it has taken care of the abscesses I had and kept them away.
Also, each time I get the injection I am having to do a medrol dose pack to counter act my allergic reaction. As we speak I am 10days post injection, finished with the medrol pack, and now covered in tiny little red itchy bumps on my face, neck and chest, and larger bumps/welts sporadically on my body. The steroid cream the doc. gave me seems to be helping though.
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
10-19-2012, 09:05 AM   #92
David
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Lawyerboy, have they evaluated you for SIBO?
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10-19-2012, 10:04 AM   #93
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Hi Reachel, glad to hear that Ustekinumab seems to be working for you. How much Prednisone do you take a day? Did you manage to taper? If so, how did you taper?

Hi David, thanks for the SIBO suggestion. However, I feel my pain is coming from my colon. That would rule out SIBO right?

Last edited by Lawyerboy; 10-19-2012 at 11:06 AM.
10-19-2012, 10:52 AM   #94
David
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I was thinking more along the lines of the bloating may be due to SIBO rather than the pain. If you don't have any active inflammation they can find, it may explain things.
10-22-2012, 09:04 AM   #95
raechel
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Unfortunately, if I had to say today if the Stelara is helping, my answer would be no... having said that, other days I would say maybe... so who knows.I have been tapering 2.5mg every 2 weeks, and I am down to 5mg now. I have been pretty miserable symptom wise all weekend though. Going from 7.5 to 5 has been tough-ist, but my doc. is insistent that I get off prednisone at least for a short time even if it means an increase in symptoms.
10-22-2012, 10:51 AM   #96
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Raechel, how long are you on prednisone? Me 8 months.

I just returned from the ER because the pain and bloating is becoming unbearable to live with. The GI and surgeon I saw today both think bowel adhesions are causing my problems; I might face surgery on the short term :s
10-22-2012, 11:12 AM   #97
raechel
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I think it has been about 10 months this time around (although I think I have been on some amount of steroid more often than not in the last two years.. heck, in the last 6 years I don't know that I've had more than 3 or 4 consecutive months with out steroids).

I'm sorry to hear you are having so much pain. So the tests are showing improvement in inflammation, but you are still having a lot of pain? Are your symptoms similar to what they have always been? I am not familiar with bowel adhesions. Are yours caused by previous surgeries?
10-22-2012, 11:47 AM   #98
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I was scoped last Thursday and 99.9% of the inflammation is gone, either due to the meds or the scdiet I am on, or both. The pain I have however never subsided, thats why I started to think adhesions might be the cause. The GI and surgeon both agree. I think the adhesions follow from the severe Crohn's inflammation; I had major surgery in 2003 though.
10-22-2012, 12:23 PM   #99
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I am waiting for approval on the study right now. Ive failed Remicade, Humira, steroids, asacol. Hoping this will be the one!
10-22-2012, 12:59 PM   #100
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Hope it will work for you Cupcake!
10-22-2012, 02:57 PM   #101
raechel
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Good luck cupcake!
10-23-2012, 11:20 AM   #102
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It's looking good for me starting the Stalara this week! I got a kick out of seeing the commercials for it. Caridee from America's Next Top Model is the spokesperson. A little odd, but it seems like all these crazy expensive drugs have spokespeople!
10-23-2012, 05:57 PM   #103
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Keep us updated on your progress Cupcake
11-09-2012, 06:52 PM   #104
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Just received all of the paperwork to possibly participate in the Ustekinumab study. I have to say I enjoyed reading everyone's comments. I will let you know what i decide. Thanks :-)
11-18-2012, 11:10 PM   #105
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Tomorrow is the day I get the first infusion. Too excited to sleep. After not havng any maintaince drugs since July, I'm hoping for the best. Being able to get off prendisone and back to living my life without the stress of uncontrolled crohns's disease.
11-19-2012, 06:25 AM   #106
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Good luck to you Cupcake
11-27-2012, 08:56 PM   #107
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I will have all of my testing on Dec 4th to see if I am OK to get started on Stelara or placebo on Dec 19th. My chances are 2 out of 3 get Stelara. I am allergic to Remicade, Humira, 6MP. I have also failed at Cimzia, MTX, Thalidomide, etc... I just found out I tested positive for the JC Virus, so Tysabri is out for me. The Stelara research and Tysabri are my last 2 choices available at this time. So I am giving it a try. I am down to 20mg of pred and HATE it!! I have not had a descent nights sleep since they put me on it a couple months ago. The headaches, muscle cramps (nightly), blurred vision, weight gain, dizziness, bloating, bloody stools, moodiness, etc are making me crazy. I just started posting on here recently trying to get the scoop on everyone's comments on Stelara. I have to say I should do it more often...I like reading about everyone's experiences. It seems to help knowing other people are going through the same stuff!! Thanks a bunch!!
11-30-2012, 12:53 PM   #108
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to cupcake: How did your infusion go? Do you think you got the meds or the placebo? I hope it all went well :-)
11-30-2012, 01:13 PM   #109
raechel
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My doctor has decided to take me off of the Stelara, after a recent hospitalization due to an extreme headache, throwing up from as little as licking a popsicle, and having random red itchy bumps/welts on throughout my body. Especially since the headache and itchy bumps have been sporadically happening pretty well since I started the injections, his best guess is that the Stelara is at the root of it. I have also been noticing a lot of vertigo, heart palpitations, and SOB with the slightest activity (for instance walking from my chair to the bathroom). The bummer is I was noticing some improvement in the Crohn's...especially that the abscesses had stayed away. Big picture wise though, I really think the bad was outweighing the good for me... I hope I am not really regretting going off of it in a few months. At least I have my pre-transplant testing and re-evaluation scheduled for a stem cell transplant at the end of January.

I wish you all the best of luck and hope that the side effects/allergic reactions/whatever you want to label it that I have had to Stelara are not common, or experienced by any of you. Good luck everyone!
11-30-2012, 07:58 PM   #110
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That's too bad raechel I was really hoping it'd do the trick for you. So stem cell transplant is next?
11-30-2012, 08:17 PM   #111
raechel
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Thanks, David... it would have been awesome if it worked out.

Yep, stem cell transplant here I come! I went to Chicago last December for evaluation and qualified for the transplant then, but couldn't get it approved by insurance, so I decided to try Stelara. Luckily, in January I will be eligible for Medicare for having been medically disabled for 2 years, and they are expected to cover a large portion of it. For the remaining portion we have been fundraising for about 5 months and have enough money to at least cover the up-front costs. I already have an appointment for the last week of January for my pretransplant testing (and re-qualification since it has been a year). If all of that goes according to plan, on Valentines Day my brother will have his stem cells harvested and soon after that the process will begin.
11-30-2012, 10:03 PM   #112
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I hope all goes well! When the time comes, please create a thread about it (if you're comfortable doing so of course) so we can support you and learn.
12-05-2012, 03:06 AM   #113
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to cupcake: How did your infusion go? Do you think you got the meds or the placebo? I hope it all went well :-)
I am finally starting to feel a bit better. I don't feel like I saw an immediate miracle (which is how I felt with Humira years ago) but I have seen significant progress and I haven't been having hardly any of my esophageal issues which plaque me more than any other symptom.

I had a quick exam under anesthesia to go over the perianal fistula I was having issues with, and it showed two new fistulas which were most likely developed when not on any medication other than prendisone for a matter of months. I had a new seton put in and it has been going quite well so far, and I feel as if there has healing since beginning the stelara!

Oddly enough, I haven't seen a reduction in my psoriasis.
12-13-2012, 05:14 PM   #114
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Hi all, I am now in week 18 of Stelara/Ustekinumab trial in Cambridge. I cannot speak highly enough of how great i feel on this treatment. Being classed as a severe crohns sufferer, I qualified for the trial about 8 months after being diagnosed. I now go back four weekly for injection, and have seen complete remission. If anyone required any advise on the trial, i would love to be able to help someone else. So far, I feel fantastic (aside from tiredness we all suffer)
12-13-2012, 09:05 PM   #115
David
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Welcome Stephienc! I'm so pleased to hear that the Stelara is working well for you. That's fantastic I hope it leads to a LONG remission.
12-13-2012, 10:00 PM   #116
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Great Stephienc. I am also in remission!
12-14-2012, 03:19 AM   #117
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In remission while using Ustekinumab? Great great news
12-14-2012, 05:15 AM   #118
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Since I am using Ustekinumab my colon went from severely inflamed to fully healed. I am also following the SCDiet though, and I am on a low dose of Prednisone.

Btw Stephienc, are you also enrolled in the phase 3 trial of Ustekinumab? I am, and I get an injection every 8 weeks; you mentioned that you get one every 4 weeks?
12-14-2012, 05:40 PM   #119
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So they have not yet taken you off steroid? Yes in phase 2, I believe they call it Uniti? I am having injection every 4 weeks still. Thats great news. I have not heard of the diet?
12-16-2012, 12:57 PM   #120
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I am in the process of tapering the prednisone. Google "scdiet". It may help you.
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