update- does this sound right to you guys?

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mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 6/2/2010 7:53 PM (GMT -7)   
as most of you might know, have surgery in Jan.  after surgery Dr tried twice with 6mp but i could not tolorate it.  Had nausa, loss of appetite some pains lost 13 lbs in a few weeks.  Dr did scope me last weel and did find active crohn's already back but felt it was not severe to cause problems.  (biopsy confirmed crohn's) so he stopped 6mp.  Now, the next step
 
he wants me to restart remicade.  I started it in Nov and Dec of last year.  got through the second dosing but stopped.  realized I needed the surgery and i was having bad nasua and such. so he stopped it to get ready for surgery.  now he wants to try it again since my system as clean as it has been in 13 years.  He said he will not do the 3 doses to ramp up he will just start with a treatment and then do another in 8 weeks.  he did say he will give me steroids right before and during the first infusion to help adviod any issues with rejection of the med.   has anyone elsse gone this route?  I did not think you could stop and then restart this stuff.  as a side note I was on cimzia for 14 months but still had a blockage last oct prior to the remicade treatment route.  Dr thinks i was too far gone before we started the cimzia so he does not want to say the meds failed me..yet...that is why we wants to try again. 
 
I am not sure this is the right approach.  any ideas?

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/2/2010 8:17 PM (GMT -7)   
Well, I can tell you that none of the medications will fix a stricture. Strictures are scar tissue, and once there, the only way to get rid of them is surgery, as you know.

You can start, stop and restart Remicade. The doctor can do an antibody test that will let them know if you have built up antibodies to it. If you haven't, you can go back on Remicade.

From what my GI has told me, going on Remicade or one of the other biologics, is becoming more a first choice treatment. Could be your GI wants to keep things under control now that the surgery is done.

I wouldn't say that Cimzia failed you. Sounds like the timing was wrong.

I hope it works well for you. Hang in there.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/2/2010 8:37 PM (GMT -7)   
What Matthew says is true about strictures only if they are made up solely of scar tissue. Strictures CAN be made up of a mix of scar tissue and inflammation, in which case if the inflammation dies down, the remaining scar tissue might not cause any problems. Strictures can also be made up only of inflammation, in which case they can disappear if effectively treated - my daughter's stricture vanished once her inflammation died down.
 
It does make some sense to use pred to prevent a reaction, and the doc does sound like s/he is being careful and methodical about Remicade.  Matthew's antibody test suggestion sounds good and true, many docs are now promoting the top down approach, meaning starting with the strongest stuff - biologics - first.
 
I don't happen to subscribe to this approach, but this is partly because my daughter is doing well on meds and diet.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/2/2010 11:16 PM (GMT -7)   
Good point, it's got to be inflamed before it can turn to scar tissue. So if the inflammation can be knocked down before it goes to scar tissue, it can clear up. Thanks for clarifying that.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 6/3/2010 3:14 AM (GMT -7)   
thanks! i am going to go with what my GI's suggestion. at this point,i i want to not have surgery again anytime soon. that was not a good experience.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/3/2010 3:08 PM (GMT -7)   
If you have to stop and restart Rem, my understanding is that it's best to do that within a four-month window. However, it's not until about 2 years that the risks of a severe reaction really start to increase (1/3, if my memory is correct).

This is old info so there may be some more recent statistics somewhere on the web, but I hope this gives you a little reassurance.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

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