going down the medication ladder

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Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 8/31/2009 2:37 PM (GMT -7)   
I was diagnosed with Crohn's 2 months ago. Previous to this, I never had any symptoms of Crohn's except possibly my SI joint bothering me for a couple months about 5 years ago, although I'm not positive it was a precursor to Crohn's. When the disease finally presented itself, it came on really strong. I was in and out of the hospital 3 times with the doctors trying to diagnose me. When they finally diagnosed me with IBD at first, they put me on 40mg of Prednisone and Sulfalazine for my arthritis. I felt better after taking them, but not much.

I ended up going back to the hospital after 2 weeks of not feeling much better and starting to feel worse. When I went back, I met with my GI who said my colon was moderate but I had so many extra-intestinal symptoms that it made my Crohn's pretty severe. He explained to me that now the thought with many GIs is to start Crohn's patients with medications at the top of the ladder to prevent hospitalizations and surgeries. So, with a lot of apprehension, I agreed to start Remicade, because I wanted my life back and needed to get back to work.

Thankfully, the Remicade started to help me the next day, and knock on wood, I have no symptoms at all of Crohn's. I am also taking Methotrexate with the Remicade. Although I am so thankful that I have my life back, I'm really worried about the possible side effects of staying on Remicade (and Methotrexate) for a long period of time.

I'm wondering if anyone has gone down the ladder of medication and had success? I'm afraid that once I try to go off Remicade that I'll relapse and try to go back on and it won't work for me anymore. I know I should probably just feel thankful that I feel so good, but I can't help but worry. Does anyone have any experience with this?

Thanks!

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/31/2009 2:53 PM (GMT -7)   
You know, it's odd. I've heard this as the standard treatment for many people, but I was started on asacol and prednisone. I worked my way up to pentasa, and I'm taking humira now too.
I hope this treatment works for you. I've heard a lot of good things about remicade.
Just wondering though, what has your GI said, if anything, about diet?
It's just a good thing watch. I didn't notice as much improvement until I started taking Align and using a knock off of the SCD.

Best of luck!!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 5 mg, pentasa 2 pills 4x a day, omeprazole in the morning, and a women's multivitamin. I'm also trying a B vitamin complex, but it doesn't seem to be working so I'm considering the shots.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 8/31/2009 4:05 PM (GMT -7)   
Hi LMills,

The only thing my GI said about diet was to go low-fiber while I was waiting for my colon to heal, and once that was done, he said I can eat whatever I want. I am trying to get fully into either the Maker's Diet or the SCD, but I have a past history of eating disorders, and it's been really hard for me to go into the restriction mindset and not end up going overboard on the "forbidden foods" later on. That being said, while I have been trying to fully immerse myself into the diet, I have had some slip ups, and oddly enough, knock on wood, they haven't seemed to affect me besides the occasional bloating. But I don't want to keep eating refined sugars, because I know it's bad for me, and especially if I want to go down in meds, I will have to adhere to the diet.

How is the Humira working for you? I'm not familiar with Align.

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 8/31/2009 4:49 PM (GMT -7)   
The statement that you got your life back and the fact that you also have reason to be doubtful by saying that you do still worry is correct. In other words I believe you realize that the things that include getting your life back may not always be consistent throughout the future. Some people gauge this by their ability to work, and realizing that you may not always be working due to a flare, is being honest with yourself. I never went off Remicade and then back on so I cant respond. No doubt you are extremely fortunate to have zero symptoms, I really hope this will continue. As far as the side effects I wouldnt worry about that as the side effects are by far less troublesome than a flare.

kandc88
Regular Member


Date Joined Sep 2008
Total Posts : 65
   Posted 9/1/2009 3:09 PM (GMT -7)   

I have experience in the opposite direction and now have only 120cm of small intestine to show for moving up the ladder.

Diagnosed in 1997

Pentasa, Flagyl, Prednisone prior to surgery in 1999

Pentasa, Cipro, 6-mp and maybe a year of Remicade (worked for me, but too much damage already done and scar tissue present) prior to surgery in 2003

6-mp prior to surgery <3 weeks ago.  Now off all meds waiting to finish healing before starting Humira, which I'm hoping will work for me.  I can't afford to lose any more guts!

I think from my viewpoint, if what you are doing is working, stick with it!

 

 


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 9/1/2009 6:15 PM (GMT -7)   
Octobergirl,talk to your G.I.
Tell him or her of your concerns.
Like kandc88,I'd stick with them until they no longer work.(especially Remicade)
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Terbinafine,
Remission since surgery
and 8-week Remicade.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 9/2/2009 7:55 AM (GMT -7)   
Hi October..."top down" theory of meds is very popular with many docs. I don't subscribe to it for myself, but I think that is due to my situation (age, how long I have had the disease, limited symptoms) and my personal beliefs on meds. I have not found any definite studies to prove 'top down" or increasing meds is better. I have looked. it sounds like it is working for you now.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 9/2/2009 8:55 AM (GMT -7)   
I've been up the ladder and back down...........and being back to more basic meds is keeping me relatively symptom free at this point. The only reason I stopped Remicade was because of side effects of severe joint pain. Thankfully, it had me to a point in remission where I can be maintained by lesser drugs. Should the need arise, I'd have to look at Humira or Cimzia. I'd stick with the Remi as long as it's still working for you.

L.
 

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