When to move on (from Cimzia)

[Tabs]

Hi all,

I am trying to decide whether it is worth doubling my Cimzia dose or just calling it quits and pursuing another (non-surgical) option.

Basically I have been flaring for just over a year now with most of the disease in my sigmoid colon and terminal ileum. My doctor put me prednisone and that didn’t do anything for me this time around (it got me into remission for my last minor flare), so we decided to try the biologic route. I started Cimzia about 4.5 months ago and while I have seen some improvements in stool formation, usually only for a brief period of time between injections, my urgency and frequency only seems to be getting worse. On top of all that, I have been dealing with terrible bone / joint pain in my hands, elbows, and feet. The foot pain can be really bad and I have missed work just because I can’t face getting out of bed and walking.

Given that information, my doctor thinks I should double the Cimzia dose (400mg every two weeks), but I am not sure that is the way to go. I think his decision is based on my CRP results were 74 two months ago then 112 last month, and then 43 after my most recent injection. To me there is too much variation in those data to conclude Cimzia is effective. One thing that may have helped is that I switched to a vegan diet, but my doctor doesn’t seem to think diet can improve things that much. Also, a CRP reading of 43 is still very high and worth celebrating.

So I guess my question is, when is it time to try something new? I think doubling does may improve things, but I am obviously dealing with some side effects that I fear might worsen. Also, I am no convinced doubling the does will do anything for my urgency and frequency problems if the current does has done absolute nothing.

Any thoughts?

Thanks,
Dan

 

[tots]

I tried Remicade, Humira and then Cimzia- have not hit remission yet so I just started
,Remicade again. My impression is I need more than one drug to hit remission. I to have
horrible joint pain. That's been helped with the VitD I started. I was at 18 which is pretty low.


Good luck. Keep us updated on medication changes. It always gives me something to
talk to my dr about.

Good luck

Lauren

 

[gtc45]

i also am trying to decide whethere to move on from cimzia since i still getting watery bm,s. i been on it for 7 months and the doctor wants to start me on entivyeo.

 

[Tabs]

My doctor has mentioned entivyeo, but wants to switch to Remicade first because it tends kick in faster (assuming it will work). Its another TNF blocker so I am skeptical that it will be an improvement.

gtc45, your experience sounds similar to mine. Hope entivyeo or whatever you choose next works. Good luck.

 

[samman]

Your joint pain is probably from all the inflammation. It took time for me to get joint pain with crohns. If your crp goes to normal with treatment it should go away like mine did.

 

[dee]

I have been on Cimzia for 11 months and out of all those months it probably helped for 6 months but now I'm back to bleeding and Anemia so the doc is trying to get me on Entiveo. We shall see if Blue Cross will ok it. They are the ones that had me try Cimzia and it didn't do much for me. I have been in a flare for 2 years.