What to do now

[pnp26]

Hi Everyone I haven't posted in forever but I don't know what to do. I have been on humira for 5 months and I was doing great until 1 month ago when it stopped working. This happened to me with remicade, I was on it 9 months and it no longer works and I have been on cimzia which did nothing for me. I am on pentasa also. What do I do next? I am so sick right now, my left side hurts to the touch and to any light pressure and its hard to get through my day at work without running for the bathroom. What other options do I have???

 

[D Bergy]

Sorry that you have not had a response yet.

I do not have a lot of experience with commonly used Crohn's medications so I am hoping someone else will jump in here. I like to have experience with something before I say much about it. But, my Gastro recommended Imuran and said he has had good luck with it for his patients.

I did not go that route, but maybe it is something to bring up with your doctor.

I am using Low Dose Naltrexone, but if you are not in good shape now, it is probably not a good option at this time. I also use some natural anti inflammatory supplements, which could help somewhat, but they are better for maintenance than bringing down an existing flare.

Let us know what you end up using, and how it works.

Best Regards

Dan

 

[My Butt Hurts]

Not sure if this will help you, but maybe a double dose of Humira?
I was on Humira 4 1/2 months when it quit working. My doc wanted to do a double dose, but insurance wouldn't approve it cuz I hadn't tried Remicade yet.
Maybe a double dose will work for you, since it worked so well in the beginning.
Good luck.

 

[kello82]

hey there
i also went down a similar route with the medications. remi first- then stopped working. then humira, which didnt really do anything. based on that my GI had little doubt that cimizia would be the same.
i have just started tysabri, 2 weeks ago was my first dose. it has made some slight improvements i think, but its early to tell.
for me it was either the tysabri, which frankly scares me b/c of its toxicity thing, or a ilieostomy that would most likely be permanent. so i chose to give the medecines one last chance before i surrender my colon.
any questions, ask away! i have a thread about my tysabri experience thus far if you want more info on that.

i guess my main advice is do some research on all the possibilties for you and then talk them over with your doc.

 

[AmandaC]

Hi kello82. It sounds like I'm in a very similar situation to you at the moment. I started on mesasal, pred and 6-mp then moved on to flagyl and cipro which gave me some relief but was told by my GI that antibiotics were not a long term solution due to side effects, so went on Humira, but I've seen no improvements after 5 weeks, still hoping that it's going to work!

My GI is now telling me that an ilieostomy may be my only option. I also want to try all the drug options before surgery. I've never heard of tysabri so will look for your thread.