New treatment possibilities

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 10/5/2009 7:48 PM (GMT -7)   
Don't know if this has been posted, but thought it was interesting and hopeful for those with not much hope left.
 
 
Currently taking: Humira 40mg/every other week, Imuran 50 mg/day, Zoloft 50 mg/day, vitamins and supplements, Phenergan and Ultram as needed, prednisone tapering down
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
Diet:  have tried Maker's Diet, currently on gluten-free, dairy-free, sugar-free diet
Surgeries: Appendectomy 2001, Ileocecotomy 2007


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 10/5/2009 8:36 PM (GMT -7)   
These discoveries are always bittersweet. It's great that they're making progress but then it'll take at least 10 years just to develop a treatment and then another 6-8 years before it gets approved, and we all know how much damage Crohn's can do in that time.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/5/2009 8:58 PM (GMT -7)   
Here's maybe some research that maybe closer to market, if it actually pans out in further clinical trials:

Alequel: www.centerwatch.com/clinical-trials/results/new-therapies/nmt-details.aspx?Catid=51

Colal-pred: www.alizyme.com/alizyme/products/colalpred/

Myoconda: www.giacondalimited.com/pages/products/myo_conda.html

Semapimod: http://www.drugs.com/clinical_trials/cytokine-announces-oral-efficacy-anti-cytokine-semapimod-2484.html

Low Dose Naltrexone: http://www.lowdosenaltrexone.org/

I'm sure there are more. These possibilities are what keep me going. Also, there has been some good research in c-diff relapse prevention as well - IBDers can be especially prone to c-diff infections (my husband has had it twice now), and a possible vaccine coming soon as well. Anything that helps keep IBDers healthy is great! I sure hope that they find some more options. It plays havoc with my anxiety to think about if/when remicade is going to stop working for my husband. . . so much so, that I am going to go see a psychologist soon to go try to learn some coping skills, and maybe get on some meds. My husband's illness has certainly caused me to develop an anxiety disorder . . . I find it way more stressful to deal with his illness than it really should be . . . hopefully some meds will help.

I hope soon we'll have some breakthroughs in crohn's research (and auto-immune research as well). It is good that so many people are researching auto-immune conditions, so I am hopeful that one day soon, in the next decade, we'll at least get more effective treatments.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 10/6/2009 4:14 PM (GMT -7)   
Yes there are other links but yours above are great (i had to cut and paste some of them but no problem) and suggest a moderator should store/keep track of them. I have copied them to my files.

RE: Alequel: regarding a tailored approach, this is interesting but rather than the colon extracted protein I would just tailor an enteral diet until find the culprit.
RE: Colal, I was never fond of release delivery especially those lil beads of pentasa for instance...the beads gave me alot of irritation especially with fistulas,, but this is for delivery of prednisone so
it might have benefit for reducing side effects of a steroid with a coating to target the bowel better.
RE: Myoconda, this is the antibiotic therapy, (as alternative to cipro, flagyl), this regimen is of rifabutin, clarithromycin and clofazimine targets the thought that this disease is MAP related.
RE: Sempimod , a cytokine inhibitor
RE: naltrexone: an opioid receptor antagonist

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/6/2009 4:32 PM (GMT -7)   
Just to add to the list, I completed a clinical trial in 2006 for Adacolumn (www.adacolumn.com/index.htm), which pushed me into remission for 2 1/2 years. Unfortunately, I have not been able to find much on this treatment since then so I don't know what's going on with it getting approval. I believe it already has approval for UC.

Of course, based on my recent finding from my Prometheus test, I may actually have UC and not Crohn's (even though all my ulceration and inflammation back then was in in my terminal ileum -- who knows what's up with that), and most of the research on this treatment has been for UC patients (my clinical trial was for Crohn's patients).
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/6/2009 4:50 PM (GMT -7)   
Here's what I could find about adacolumn regarding where they are with their research:
www.otsuka-us.com/images/pipeline%20chart%204-17-08.jpg

It seems it is already an approved treatment in Europe and Japan, so I guess we'll start soon (I hope). It seems that John Hopkins is conducting an adacolumn clinical trial for crohn's right now - maybe this is the pivotal studies or whatever.

Though, a posting on the UC healingwell board makes me think that adolumn is just not going to be available here in the US, because it didn't do so well in clinical trials:
http://www.healingwell.com/community/default.aspx?f=38&m=1592262

It seems that we shouldn't be limiting treatment options for chronic illnesses, especially if they don't really have serious side effects - we should let people try it, and it if it helps, they should be given that option. That's my thinking anyway.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 1:55 AM (GMT -7)
There are a total of 2,735,780 posts in 301,335 threads.
View Active Threads


Who's Online
This forum has 151435 registered members. Please welcome our newest member, Manny222.
153 Guest(s), 5 Registered Member(s) are currently online.  Details
Heatheranne87, Job_the_Phoenix, kimbfowler, Lymiemomster, sharron19


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer