Doctor update

[chrisnsteph1022]

I saw my GI yesterday for the first time since I started Remicade a couple months ago. I told him it got me about 80% better, but I was still having daily pain and diarrhea 2-5 times/day. MUCH better than before, but not what I'd call remission. I self-started Entocort a couple weeks ago to see if that would help and yesterday was my first symptom-free day. He told me to stay on the Entocort for 2 months (1 month at 3, 2 weeks at 2 and 2 weeks at 1). I'm having a little pain and diarrhea again today, though. I just don't know if the Entocort is doing anything.

I had labwork done and my white count was 9.1, ESR was 14, CRP was .8. All normal! So that's good news.

Anyhow, I'm now on Remicade (5ml/kgx8 weeks), Lialda (4/day), Imuran (100mg) and Entocort (9mg). I feel overmedicated, but if it works, I'm ok with it for a while. I'll eventually want to come off everything but Remicade. I don't mind staying on that one forever (I know, it's the riskiest, but it works the best).

 

[Ducey99]

My first Remi infusion got me about 80% better also. And then things just kept getting better. The other 20% came in time. I was on MTX when I started and came off that after a while and was on remicade only (kind of like your imuran situation I guess).
Remicade really is great and if you respond like I did things are going to keep getting better!

 

[Grumbletum]

That's great about the results and hope you can stay on the Remi. I still feel a little bit, that I'm walking a tightrope without a net without it.

 

[Fayne]

To Chrisnsteph1022:

How did you feel before starting Remicade? I see that you're on Entocort and Imuran in conjunction with the Remicade.

I'm on just Remicade right now. It has helped with the D but I'm still going 8-12 times a day. I asked my GI doctor about starting Imuran and he said he won't do it because of the increased risk of cancer.

 

[Mom2oneboy]

So glad you are feeling better!! Hopefully, you will continue in that positive direction and get to that 100%!

 

[chrisnsteph1022]

To Chrisnsteph1022:

How did you feel before starting Remicade? I see that you're on Entocort and Imuran in conjunction with the Remicade.

I'm on just Remicade right now. It has helped with the D but I'm still going 8-12 times a day. I asked my GI doctor about starting Imuran and he said he won't do it because of the increased risk of cancer.

I was in pretty bad shape. Lots of blood, going 15-20 times/day, taking oxycodone daily, nauseous. I was functional (i.e., able to work my desk job), but I was miserable. Within 3 days of that first infusion, I was 80% better. I just haven't improved much since then. I was already on Apriso and Imuran before I started Remi, and they obviously weren't helping. But the doc wanted to hit it hard with everything we could. I just added Entocort a couple weeks ago.

 

[Fayne]

I'm glad your feeling better on this combination of drugs.

 

[David]

Hurray for a symptom free day and good test results! I'm so happy for you Here's to many more!