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For those worried about Remicade/Imuran etc; our success

Hey all old and new friends.

I've been on and off for awhile; am coming on now to share our present success with dual therapy of the scary drugs, for those worried to try it.

My old posts about being so afraid of Humira, then Remicade, then dual therapy, so much anxiety as Violet trialed all three, tell the story.
I remember then looking for threads about kids on those drugs who were doing well, for comfort. I found a few.

So since V is now on both Remicade and Imuran I thought I'd post for any who are faced with that decision, to read a case wherein there was a good result.

V got very bad last May, had to go into hospital on IV pred. She'd been on Remicade since Dec at that point, and had finished a long course of pred in Feb.
While in hosp we added Imuran, then began a sloooow pred wean.
She's been WELL since June. Better than she's been since before developing Crohn's. The dual therapy is working, and I RESISTED it for months, it took her landing in hosp to get me to agree.

I am still scared of it. Very scared. But she has a normal life back.

She finished pred mid-Nov and has scopes and pillcam end of Jan to see what's up internally with pred out of the equation. If negative finding, the plan is to DROP REMICADE.

I hope this helps anyone considering these drugs and in fear of them as I was and am. :ghug: I resisted thinking she wouldn't respond, as she'd been on Remicade for five months when hospitalized. I was chagrined when she did respond and fast.

The disclaimer of course is she could stop responding tomorrow. But she has had six months now of normal life; without the drugs she would not have. My hope is she'll be able to maintain this degree of health on Imuran alone.
 

Tesscorm

Moderator
Staff member
So GREAT to hear! :dusty:

That is almost the exact treatment path my aunt took many years ago... two years on remicade and imuran and then dropping the remicade (although, as I've mentioned, she also maintains a very small dose of steroids). Until beginning this treatment combination, she'd had a fairly rough time, however, she has now been in remission for 10-15 years!!

So very glad V is doing well!! Wishing you both a very Merry Christmas and only good health into 2014!! :D
 

my little penguin

Moderator
Staff member
You know I was going to ask......
Why stop the remicade if the scope results are good.
A,) Since you don't know if its the combo that is keeping her at the good point
B.) you risk building antibodies to remicade if in fact that was needed to push her to the good side of things

Especially since she just got off pred in nov ...
Combined with remicade and Imuran .


Obviously the Gi has reasons
Just curious as to what they would be given the above
 
Heya MLP!

GI said the protocol he follows is six months of remission (not six months on the drugs) on dual therapy, then d/c EITHER the biologic OR the immunomodulator. He said in some cases he d/c's one of them after three months, but not with Violet's history of being refractory.
Reason of course being the dangers of dual therapy.
Yep that creates risk of antibody development to Remicade.

In her case if she fails monotherapy he is talking a consult with Dario Sorrentino MD (really bigdog) and experimental drugs or TPN. He is very against further pred use for her, even though it is the only thing to which she responded (until the dual).
 

Tesscorm

Moderator
Staff member
Just curious... but why not remove imuran and keep remicade? That way, if treatment with remicade alone doesn't work, you can always add back the imuran??
 

Tesscorm

Moderator
Staff member
Correct me if I'm wrong... Excluding dual/concurrent treatment, I know that different drugs have slightly different risks but, my understanding is that the risks are quite comparable (including cancer risks) when one or the other (ie immunosuppressant or biologic) is used... Stephen's GI wasn't really interested in considering an immunosuppressant over a biologic as he said something along the line that there was greater potential for success with remicade without much difference in risk (not verbatim but along these lines...).

So just wondering the reason's for her GI's preference to remove the remicade (did once ask my aunt but she didn't know... just followed the doctor's orders. ;))
 
He said he usually prefers to d/c Remicade due to cost and convenience factors.
Your aunt, Tess, must've been under the same protocol? Her story feels good to hear.

He did say risks are equivalent on either one when used as monotherapy.
 

DustyKat

Super Moderator
Wow! It is fab to hear that V is doing so well!

I hope all continues to go well for a very, very long time to come. :)

:mademyday:

Dusty. xxx
 
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