I need HELP!

[TeenageStephanie]

Hi everyone, it has been a while since I have been on here.

So to sum up my story: I have Crohns since 2011. It is in my large intestine and end of the small intestine. I have tried many immunomodulators, failed remicade and now humira. I cannot get off steroids without flaring. I am currently flaring and am trying to stay off the steroids as long as I can. What is there to do now? I really do not want to do Cimzia or any trial drug.

-Stephanie

 

[alex_chris]

Mhmmm, can you tell us why you failed remicade and humira? Did it just not work, or did you experience side effects that you could not get under control?

With immunomodulators, do you mean aza and 6-mp?

As you will read on here, there is LDN, but it is not approved for Crohn's and only a small study showed it is an effective long term Crohn's management drug.

Apart from aza, 6mp, remicade, humira, cimzia and LDN, the only other long term drugs I know of are Simponi (only approved for UC and only approved last month by the FDA), Tysabri (I'd try Cimzia before Tysabri) and Stelara (still a trial drug). Simponi, Tydabri and Stelara are all biologic TNF-alpha blocker.

I don't know or any other drugs used for long term management. Why is it that you do not want to consider Cimzia?

 

[lgpcarter]

alex_chris summed up the choices nicely. The only thing I don't see mentioned is methotrexate. Have you tried that yet?

I am in roughly the same boat as you, though have had success in the past with aza. Thinking my next step is going to be Stelara or Simponi, as I think there are clinical trials being done on them here at the moment.

 

[nogutsnoglory]

I think it's important for us to know why you failed it. Was it a reaction or it just never did anything? Why are you opposed to Cimzia? I failed Humira but Cimzia is helping me. You never know which drug might be the right answer for you.

Steroids really do cause lasting damage and its important to be on maintenance therapy considering the extent of your disease.

 

[Jabocs]

Hi Stephanie,

I guess I have a few questions for you. Which immunomodulators have you tried? And with remicade and humira did you have any success with them at all? And when you “failed” them, what do you mean by that—they just stopped being effective (or became less effective), or did they do harm? Keep us posted! Also, in case you want some professional opinions, you could try asking doctors on this site I’ve used before (my sister was the one who sent it to me and she swears by it for all kind of medical advice!): bit.ly/aohS8N. I’ve gotten pretty good advice, and it’s possible that you could talk over your doubts/concerns with Cimzia with a doctor on it too. Hope it helps! Let me know how it all works out.

Much Love,
Ally