Newly Diagnosed and no relief from medications

[CheriW]

Hi Everyone,

I was diagnosed with Crohn's in December 2015 after a routine colonoscopy. I had NO idea I had this disease!

Looking back, I have had symptoms for 20-30 years!

Since diagnosis, I have had no relief from either prednisone or Humira. My GI seemed to think that Humira would be the "end all, miracle" to make me feel better. But nothing has changed!!!

I go see my GI next week, and am really worried about what is next!!

Thanks for any/all advice I can get!

 

[ronroush7]

Hi. I am sorry you aren't getting any relief so far from the medicines. Your doctor may want to switch the biologic you are on.

 

[EastCoast902]

I am new to this as well, being diagnosed in Nov. I am starting Humira next month. It is my belief that it can take up to a couple of months to really work. But there are others on the board that have more experience than I do. I have been on Entocort since Dec. however that is not a long term solution for me- it's to "put the fire out" is what they told me. Good luck.

 

[caretothepeople]

Hi CheriW - Ron is on the right track here that the best next step is probably having a conversation with your doctor to discuss alternative treatment options. Up until your next appointment, be sure to be writing down your symptoms as they occur as well as any other questions and concerns you have so you can address them in your appointment. Asking questions and speaking up about any side effects you are having is critical to finding the right treatment course for you.

Google for "questions to ask biologics" and there's an article from Everyday Health that should come with questions to ask the doc about switching medications and biologics. I can't share links here but if you google it you should be able to find it.

-MW

 

[Clash]

CheriW, sorry to hear you are stuggling. There are certain steps most GIs take before stopping a biologic.

1. He will need to check and see if your body has created antibodies to humira. If you have a high level of antibodies then humira will not be effective and you will have to switch meds.

2. Sometimes levels test are run to determine if you have enough of the med in your system, if there is no levels test available for a specific biologic and you haven't created antibodies to the biologic, they will shorten your med schedule or up the dose.

3. The GI may add in an immunosuppressive med like 6mp, imuran or methotrexate this will help your body prevent antibodies to the biologic from being created. Also, immunosuppressive meds can have a synergistic effect with the biologic to help keep your active disease under control.

A med switch may come into play if the GI feels things are not progressing at all. GIs like to tweak things with current meds to see if any combination may become effective for two reasons: there is a higher risk of your body creating antibodies and rejecting a biologic if you stop it and then come back to it so it's best to see if any combinations of tweaking the regimen before giving the med up completely. The second reason is related to the first in that there are only several biologics approved for CD so the GI doesn't want to give up a med until they can establish that response to that med is negligible and it needs to be kicked to the curb.

If you are having severe reactions to the med, or the state of your disease makes it urgent thEN they may opt for a biologic switch right away.

Good luck and I hope things improve quickly.

 

[fuzzy butterfly]

Hi and welcome. I cant really add much to what the other guys have said. So just sending hugs and best wishes for a speedy result on getting better.