need opinions on Granulocyte colony-stimulating factor (G-CSF) and other things

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

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 9/16/2008 4:54 AM (GMT -7)   
Had a visit to the doc yesterday and confirmed what I was afaraid of....the Humira is not do much of anything and I most likely have a partial obstruction of the small intestine.
 
Here is what he said....and I invite comments and opinions on this...PLEASE...
 
First he thinks I should switch to Remicade.  In his opinion many folks who don't see results with Humira can still do well with Remicade and conversley those who don't do well with Remicade can do well with Humira...so he feels it is worth a try.
 
He suggested that I read up on granulocyte colony-stimulating factor (G-CSF)‚ and consider using this alongside the Remicade.
 
He is not concerned with the possibility that the Humira could have contributed to the partial blockage nor is he concerned that the Remicade could make it worse.  In his opinion it will not go away on its own anyway, he feels certain that it will require surgery eventually and said if the remicade makes it worse it really only sped up the process but would not change the end result which is the need to remove it.  He says we will need to do some tests...maybe a C scan to see the partial blockage...but he is pretty sure it is going to be due to either a twising bowel or scar tissue. (I have had three major incidents from this in the past 4 weeks)
 
I am supposed to keep taking the Humira until he sets up the infusion of the Remicade, but he does want me to switch from 2 shots every other week, to one shot every week ...He does feel I need to have any waiting period between treatment of the Humira and the Remicade.
 
 
MY CONCERNS......Is it okay to go directly from Humira to Remicade?
 
Is mixing recombinant DNA technology with the Biologic treatment a good idea?  I am concerned that I messing about with my bodies building blocks to much and could really do some damage.  Maybe create cancer issues.
 
How often do partial blockages clear themselves up?  What other things should I be doing to reverse it?
 
My first inclination is just chuck it and go back on Tysabri...but my current doc is pretty much against it based on the risk and if I insist on it he will okay it but will not do the infusions...i will have to travel to gainesville, fl for them.
 
Any thoughts?
 
 
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/16/2008 5:03 AM (GMT -7)   
Any chance that a strictureplasty could be done instead of resection? Is there inflammation as well as scar tissue forming this partial obstruction? Is there actually active disease going on and not "just" scarring at this partial obstruction? I'm assuming there is active disease but had to ask.

I'm outta my league regarding Humira, Remicade and G-CSF so can't even begin to comment on that issue‚
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/16/2008 5:06 AM (GMT -7)   
I have no idea. But I do know people who have done the exact reverse. Cancer is pretty much a given for about 1/4 of Americans.
As to the Humira not working, is less then a month enough time to get a theraputic dose in the body?
As to the blockage liquid diet sometimes help.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 9/16/2008 5:38 AM (GMT -7)   

thanks for the quick response......

 

Crohnie: There is most probably inflamation and I have had active crohns going on for a very very long time....several prescriptions of anti-b's and still no real relief.  For the most part the crohns has been tearing up my colon and leaving the small intestine alone....but now it appears that maybe it has been and is more active in the small intestine.

the doctor said he needs to do some test to see the real cause of the partial blockage...barium and x-rays, a CT scan or both.  Then he would know what he could do.....it would also tell us where the problem is.

NAVY: I agree that cancer is common...I just don't want to increase my chances.  I have actually been on Humira for over a year and the results have been mixed at best.
 
Thanks for the idea on the liquid diet...In the last 4 weeks I have had 3 very bad attacks (the only way to describe it)...and the once I get past the vomiting, gas and cramps  I go strictly liquid until things start moving and flowing again....
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/16/2008 5:41 AM (GMT -7)   
The only drawback I see to this is the possibility of developing sweet's syndrome which. According to the article I read, it's already associated with certain autoimmune diseases such as this one and there may even be a genetic link in the first place. However, it could also help you. It sounds a lot like the 50/50 with taking humira and remicade.
I would listen to my doctor personally, but I realize that this is dependent upon the nature of the relationship you have with him/her so I'm not sure in your case. All I can say is that if you trusted them before and still do now to go ahead with it. At least you'll know a little bit better what your options are depending on how the remicade affects you.
I know surgery is not the brightest outlook, but it could really help you if it that's what your treatment comes to. I've had family members in the medical profession talk about the benefits and not so beneficial aspects to this, and the former does outweigh the latter.
Anyway, best of luck in your decision!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 9/16/2008 7:39 AM (GMT -7)   

I'm pretty sure G-CSF failed in clinical trials for Crohn's a couple years back, so I have no idea why your doc would consider putting you on it.

Now that you're not really responding to Humira, there's a really good chance you're eligible for Prochymal, the stem cell drug.  As I recall, to get into the trial, you have to fail at least one immunosuppressant (6-MP or Imuran) and one biologic (Humira, Remicade).  I would try to push for that if the trials are anywhere near where you live.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/16/2008 9:30 AM (GMT -7)   
I did not take a break when switching between Remicade/Humira and back again. I had my Humira shot and 4 days later Remicade. But, i'd been off the Remicade for 6 months, so there was no "loading" dose.

I never did hear the outcome of the G-CSF trials either. So, you're talking off-label use. At least your doctor is willing to consider such.

I have an appt with my GI today, maybe I'll ask his opinion about the G-CSF with TNF blockers. I'm also asking about a trial anti-IL-12/23 antibody, called ABT-874. I heard someone on here talk about it. It's got an open-label portion after the 12 weeks (I believe) of control group. There is an 8 week washout for TNFs and 16 week washout for Tysabri.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/16/2008 12:07 PM (GMT -7)   
I wonder if the doctor meant GM-CSF? There was a study done with that material in May of 2005. The GM-CSF trials seem to have produced a somewhat positive result. See near the bottom of: http://www.answers.com/topic/granulocyte-colony-stimulating-factor
It is basically a naturally occurring factor that increases the production of immune system agents, including white blood cells and stem cells. You might want to be clear about the differences between the two, just in case the doctor is not careful enough about the distinction. You'll see that even the web page about GM-CSF does not properly distinguish between the two in its web address, even though the web page points out the distinction.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 9/16/2008 12:33 PM (GMT -7)   
Keeper said...
I wonder if the doctor meant GM-CSF? There was a study done with that material in May of 2005. The GM-CSF trials seem to have produced a somewhat positive result. See near the bottom of: http://www.answers.com/topic/granulocyte-colony-stimulating-factor
It is basically a naturally occurring factor that increases the production of immune system agents, including white blood cells and stem cells. You might want to be clear about the differences between the two, just in case the doctor is not careful enough about the distinction. You'll see that even the web page about GM-CSF does not properly distinguish between the two in its web address, even though the web page points out the distinction.
thanks....I will double check...
 
when I did some research I found that under the G-CSF it describe pretty much the same things that you mention "factor that increases the production of immune system agents, including white blood cells and stem cells. "  so now I am confused.
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 1:28 AM (GMT -7)
There are a total of 2,732,431 posts in 301,020 threads.
View Active Threads


Who's Online
This forum has 151182 registered members. Please welcome our newest member, Sean C..
192 Guest(s), 3 Registered Member(s) are currently online.  Details
THE HAPPY TURTLE, Girlie, gilly2


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