Its been a while. I still have crohns...LOL.. I have a few questions.

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 7/29/2010 6:26 PM (GMT -7)   
Gotta laugh!
I read alot of post but usually stay logged out. I have a few questions and was wandering what your thoughts were
 
Quick History
 
Crohns Disease diagnosis in 2005
Prednisone
Pentasa
MORE prednisone
Asacol
Entocort
More Prednisone
 
63cm Bowel resection 2008
Humira gave me Lupas
Imuran
NALTREXONE helped for a while
Cimzia Gave me worse "D"
 
Present day
 
Have never been on Remicade due to reaction to Humira
Never been on methyltrexate
 
What the hell is left out there? I could try LDN again I guess.
 
 
 
My GI is sending me to see a Dr in gainsville fl named William Boyd. I cant find out anything on this guy except for the fact that he has been a doc for 38 years!! Anyone ever heard of him? I wonder if hes up to date on the latest and greatest or if hes going to throw me on PRED again.
 
 
 
WHAT EVER HAPPENED TO THE LDN CLINICAL STUDIES?
 
ANY NEW TREATMENTS OUT THERE?
 
 
30yo male
Currently on LDN for Crohn's with good results
 
63cm resection in '08, exausted all meds except pred :)
Avascular necrosis of both hips, Degenerative Disk disease with 5 herniated disk, Asthma, etc etc....


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/29/2010 6:39 PM (GMT -7)   
I can only say I did remicade and went crippled with arthritis, now been on humira for the last year and the same thing is starting to happen again. I would like to start a family so MTX isn't an option for me nor would I want to be on it after reading/hearing the side effects. Prednisone been on 5 or so different times with no change except my weight by 50lbs. I feel at a lost too and have no idea what to do next. I feel you, we're in the same boat sailing to no where land. If you have any new ideas keep us posted!!  
Tracy from montreal. Dx with Cd 7 years ago but un-Dx for 10 years. Meds currently taking;Imuran (1 and half tab daily)Humira (bi-weekly) pentasa, been on prent 4 times but horrible side effects doc wont use this on me anymore. Humira has put my CD into remission, after using remicade for a year and half which caused remi induced arthritis. I am currently (most days) arthritis free. Currently dealing with endometriosis.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2010 8:09 PM (GMT -7)   
Why do you not want to try MTX, redspot? I mean at this point in time it looks like a possible option as long as you do not want to start a family right now. MTX has been around since the '50's and been FDA approved crohns since 1988. Unlike some of the drugs you have already taken.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

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Make sure your suffering has meaning…


RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/29/2010 8:37 PM (GMT -7)   
Did you ask him why he wants to send you to that doctor in Gainsville? Have you already gone to the Mayo Clinic? I've heard wonderful things about the Mayo in Jacksonville. Gainsville is great and all but I would find out why he wants you to see this doctor and give you reasons. Being able to find that he's only been a doctor for 38 years isn't much at all for you. I'd look into it more. Plus the Gainsville area just won't be the same without Tim Tebow playing at The Swamp! Go Gators and best of luck and hope you find somemore answers.
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
Zofran ODT As Needed
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/29/2010 9:03 PM (GMT -7)   
I'm frustrated waiting for the LDN clinical trial results, too. It was supposed to have been presented at DDW this year, and I paid to have a copy of the preso sent to myself, but am still waiting.
 
Dr. Maria Abreu at the University of Miami Hospital is excellent. Castle Connolly, which ranks the best docs, has identified other top Crohn's specialists in FL:
 
Dr. Gregory Bonner at Holy Cross in Ft Lauderdale
Dr. John Cangemi at St. Luke's in Jacksonville
Dr Edward Deutsch in Tamarac
Dr. Ira Schafran in Winter Park
Dr. Henry Levine in Orlando

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/29/2010 9:22 PM (GMT -7)   
There's Tysabri, if you'd be up for it. Vedolizimab (like Tysabri but supposed to be safer) is in trials. Hopefully that will be out soon.

Word from Osiris is that the Prochymal phase 3 trial is back up and running. they are 2/3 done gathering data and it's showing an excellent safety profile. (They dropped the dose arm that was not giving results.) Since the drug is fast-tracked with the FDA, once it's submitted it will be approved w/i 6 months.

I think there is some hope out there! At least, I choose to see it that way!
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09
Failed every other drug and about to prepare for ostomy surgery... In the process of gathering info and meeting with ET nurses.

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