Treatment not working :(

[Caithanc]

Hey. Just has a follow up colonoscopy today (because my current medications were not really working) I was on 9mg of entocort but weaned off and am on 4.8g mezevant and 150mg imuran. So the colonoscopy showed a lot of inflammation in my terminal ileum, it looks awful! So clearly it's not working!! My doc gave me 2 choices, prendisone next or remicade. I'm not sure what to do and I need suggestions! If I knew how to attach a picture, I would. Doc have me pictures of my colon!

 

[FrozenGirl]

That's unfortunate they are not working. In all honestly I think if entocort didn't give Imuran the boost it needed to help you, then prednisone might not either. Remicade is a great medication and for many it works awesome with few side effects. (Myself included)

My doctor also gave me pictures. I find it kinda cool, he even printed off comparison ones so I could see the differences between prior scopes.

 

[Caithanc]

Thanks for you input! I asked for pictures because I wanted to show my husband what exactly was going on inside me!! I was awake, although sedated through the whole thing, not pleasant. Aside from the bad inflammation in my TI, I hace other areas with ulcers, just not as inflammed. Is remicade a last resort treatment? What happens if that doesn't work?

 

[cantthinkstr8t]

Is remicade a last resort treatment? What happens if that doesn't work?

First, the pictures are really neat. My husband and daughter didn't think they were as cool as I did though.

I don't think it is really a last resort. I was on Humira and am now taking Cimzia(both biologicals like Remicade). If Cimzia does not do the job, then I will probably move onto Remicade.

 

[Mina_]

Hi Caithanc,

Sorry to hear your current meds aren't working. It's frustrating I know! Imuran didn't work for me either so the next thing I tried was Remicade. It worked really well for me for a good few months but then unfortunately in my case the effect started to wear off.

I've been prescribed Prednisone on and off for about 5 years now. It does help when I'm having a bad flare to get it under control, but it is a temporary and short-term solution and my GI has always given me other meds to maintain the remission. Everyone reacts differently but it can have some pretty unpleasant side effects - the first time I took it I was euphoric and had never felt so good, but since then I've had some bad reactions (mood swings, sweating, tremors ecc.)

Remicade certainly isn't a last resort. As Cantthinkstr8t said, there are other biologicals out there. I've tried both Remicade and Humira and am now waiting for Vedolizumab to become available where I live.

Best of luck and hopefully you'll find the right medication which works for you!

 

[Caithanc]

It is very frustrating! I've never had really bad symptoms, thankfully! Just diarrhea and stomach cramps, but my innards look awful! I'd almost rather deal with my symptoms than go on prednisone, I'm terrified of that drug and it's side effects :s I think I am leaning towards trying remicade and hope I get some long term relief from the inflammation!