Top-down therapy advice

[LewisS]

Hello!

When initially diagnosed I was told that the treatment method my GI was going to do was 'top-down' - since then I have been on Humira and recently increased to weekly.

I'm now in remission and wondering when he is likely to either decrease the medication or choose something less harsh like perhaps an anti inflammatory.

It could be the case that since learning my Crohns is located throughout the GI tract that top-down therapy is no longer appropriate. Initially he only thought it was in the lower GI.

Anyone else have any experience with this form of treatment? Any info would be much appreciated!

Lewis

 

[Clash]

The problem with removing a biologic like humira is that once you come off of it your body can build antibodies to humira and it would no longer be a med you could use again. Most often when docs talk about top down they are saying they start with the top meds in an effort to stop progression of the disease to hopefully lessen the risk of surgery especially in penetrating, stricturing or fistulizing CD.

If you reached long term deep stable remission the GI might suggest a move to another med but he'd probably be inclined to say if it's not broke don't fix it.

Biologics or the top meds would be a common choice if the disease is located throughout your GI tract so top down approach would still probably have been his choice. If you wernt in remission he might've added a med to the humira from a lower tier like an immune suppressant such as imiuran.

 

[Tuff]

Congrats on achieving remission. :dusty:

 

[LewisS]

Thanks for the replies!

Yeah, I'm on 6mp too. I have a couple of strictures and have had fistulas, so I suppose it would be the wise option to stick with biologics. It just sucks knowing the harm they can potentially cause, but yeah CD can do the same.

I just hope this anti MAP thing is proven to work. Sounds a lot safer.

 

[Clash]

Actually newer studies have shown the safety profile for say humira is better than that of 6mp, Imuran or methotrexate. But even in saying that the risks are still very small. If you are under 24 the risks are generally lower than the risks associated with some of our everyday activities like driving and so forth.

And yes if your disease is stricturing CD or fistulizing CD then humira remicade and the like have the best efficacy.

Some GIs will pull patients especially young adult males off of the immune suppressant ie 6mp anywhere from 6 months to to years after starting the combo therapy of biologic and immune suppressant.

 

[Caitlin84]

My GI was just telling me how he usually does not take pts off meds, even when they reach remission, because of the long term effects of long term inflammation. Though I spent years off meds, I have to wonder if it ever would have gotten this bad again if I had stayed on some form of meds. How much inflammation was going on and off over the years w/o severe enough GI symptoms for me to get checked off. I will admit that if he plans to keep me on meds in the future, I will not argue.