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.
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.