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Any other options?

I'm seeing my gastroenterologist this Wednesday to discuss where we go from here. I have failed Pentasa, Entocort, Humira, Imuran, and now Remicade (with the lupus-type reaction leading to surgery). I do well on prednisone, but every time I go off, I flare up. I see my options now as Cimzia, Tysabri, LDN, and maybe methotrexate. Can you guys think of any other drugs/treatments I may be forgetting? I'm sure there have to be others, and I want to be able to consider the risks/benefits of everything before deciding what to try next. I think the doctor is leaning towards Tysabri, but it just scares me to death. I would love to try the LDN, but I don't think I can stay off prednisone long enough to give it a try. Thanks for any input.
Thanks, Kim, I'll ask about that. I just wonder since I failed Humira and Remicade, if the Cimzia is even an option; don't know how similar they are. It's something worth investigating, though. Sure hope it will help Mike. Take care.
There aren't really any foods that seem to affect me (or maybe I just perceive it that way!). That could be something to look into, though. I saw the gastro yesterday, and we made a tentative plan. My goal is to get on LDN, but you can't be on steroids with that, and I want to be under relatively good control before starting the LDN, so it will have a better chance of working for me. So, I am going to continue to taper off the prednisone (am on 30 mg now), and if I flare up as I taper (which is what usually happens for me), we will try methotrexate injections to see if that will get me into some kind of a remission before trying LDN. Oh, and I see the rheumatologist today, and it's possible he may start me back on Imuran as it is used to treat lupus as well as Crohn's. That's the plan for now...
Hmm well if thats the case then thats great I'm not so lucky and have to follow a specific diet or my body reacts horribly but ill trade diet for meds any day of the week :)
I actually started LDN during my pred taper, around 10-20 mgs. LDN is the only reason I was able to get off the pred finally. I think they were working against one another for a few weeks because things were a little rocky at first but then smooth sailing ever since. I started LDN mid-November and by the end of January I was totally off the pred and have been great ever since. My joints were a wreck from the pred until just a week or so ago but now I'm feeling so good. Have to start working out now that I feel up to it, gotta get the pred weight off.

Good luck,

kromom1 said:
I just wonder since I failed Humira and Remicade, if the Cimzia is even an option; don't know how similar they are.
that was kind of the case for me.....remi lost effectiveness and humira had almost zero effect, so there was little chance that cimzia would do anything.

BUT, didnt you have good results with remi, kromom?
maybe im remembering wrong, but i thought that crohnswise, the remi was making you feel better. but then you had to stop b/c of the reaction.
if thats the case then maybe cimzia would help you since you did in fact respond to remi, and hopfully wouldnt cause the same reaction??

just thoughts....
I don't know why it all has to be so complicated!!! I've have some more labs return positive for lupus, so it's looking more like it's true lupus than a lupus-type reaction to the Remicade that put me in the hospital. Of course with the type of reaction I had and almost dying, I definitely do not want to try Remicade again, even though it did seem to be helping my Crohn's. The gastro says Cimzia is too similar to Humira and Remicade, and so we won't be trying that. The rheumatologist has put me back on Imuran, but for the lupus, though it may help the Crohn's to some extent, too (though it's never really helped before; he may try a bigger dose than I've been on before though). I would still like to get to LDN eventually, but from what I've read, you can't take any kind of immunosuppressants with it, so I would have to be off of the Imuran. And then there is the blood sugar problem due to the prednisone...we can't seem to get that under control either. Arghhhhhhh!!!
ahhh that is such a confusing mess!

i dont blame you for not wanting to even TRY remi again, even if the lupus/lupus reaction wasnt caused by it. too risky for sure!

do they not want to give you cimzia b/c they are afraid that youll react to it like you (potentially) did to remi?
I have failed a lot of the drugs you mentioned and I am unable to get off the prednisone either. My gastro is trying me on the Cimzia as well and I will be starting it soon. I will keep you updated with my progress.