When to pull the plug on Remicade?

[Brad P]

Last May-July I had a bad flare with GI bleed. Prednisone over that time didn't seem to work so my GI told me in August I would try Remicade which I started Oct 19th. During that waiting time, I got better on my own and was just on my maintenance drugs. My appetite was back and things felt pretty good. After my third Remicade treatment on Nov 30th, things went downhill. No pain but just discomfort, some loss of appetite, ferritin bottomed out (CBC and hemoglobin was good), and lots of stomach sloshing hours after eating which to me means stomach contents are slow to empty due to a narrowing somewhere. My stool colour has been on the darker side of brown compared to lighter which it was last fall and before this flare happened. It's like there is some active CD going on. My GI put me on Prednisone again before Xmas, 40mg/day for a week and taper, and for the first week felt better and was eating normally again but it didn't last. I'm almost back to where I was before Pred.

I've been told to give Remicade 6 months to see if it works. My next treatment is Jan 30th. Realistically, what are the odds Remicade can still work?

Because I have a history of cancer, Humira is not an option. As far as I know, Remicade was my only option left and I'm not bad enough for surgery which is a LAST resort especially since I have already lost 6ft of small bowel perhaps.

Thanks

 

[aypues]

you can def get cancer on Remicade too, or any biologic for that matter. You should be tested for a concentration level of Remicade and antibodies - Prometheus Anser IFX is the test. If your level is low or borderline low you could probably double the dose. Biologics are all about the dosing. Are you taking it in combination with an immunosuppressant? Biologics work better in combination therapy.

 

[Brad P]

you can def get cancer on Remicade too, or any biologic for that matter. You should be tested for a concentration level of Remicade and antibodies - Prometheus Anser IFX is the test. If your level is low or borderline low you could probably double the dose. Biologics are all about the dosing. Are you taking it in combination with an immunosuppressant? Biologics work better in combination therapy.

Remicade was the least risky option but the odds are still quite low. I've been cancer free for almost 8 years so doctors think the risk to me is no different than anyone else on Remicade. Yes, I am on 100mg of Imuran too and been on Imuran for years. I spoke to a friend of mine on Remicade and he had that test done and he also said it's all about the dosing. But this site says if no improvement after 14 weeks, you may as well forget it
http://www.crohnsforum.com/wiki/Remicade

 

[my little penguin]

Humira and remicade have the same cancer risk
What dose and interval are you at ?
Some need a higher dose and higher interval
Ds needed 7.5mg/kg every 6 weeks
Never made it to 8 weeks
Started to get sick again after the third dose so they moved things up and no issues

After 8 months he did have two minor allergic reactions so the GI pulled it and put him on humira


There are other biologics that have "less known cancer risk"
-they may know more later though

Stelera and entivyio
Not anti tnf

There is also ivig which can be used (boost the immune system and works with Crohns)
Een (formula only -no foods ) as effective as steroids no side effects

Crohns exclusive diet also was effective in a small group (partial en and very restrictive diet )

 

[aypues]

I spoke to a friend of mine on Remicade and he had that test done and he also said it's all about the dosing. But this site says if no improvement after 14 weeks, you may as well forget it
http://www.crohnsforum.com/wiki/Remicade

You can't believe everything online, even on this site. Research becomes out of date as more studies are done and the science becomes clearer. Is your GI doctor an IBD specialist? For me that was the difference. I was with a GI generalist who was out of his depth. Switched to an IBD specialist and am doing 100% better. I wouldn't trust anything online more than your medical team. Perhaps get a second opinion as well.