Update on seeing new doc

[aideen33]

Saw the new Gastro doc today. Im feeling hopeful.

He really really wants me off steroids (I agree!), and feels if humira hasnt worked in the five months ive been on it (it hasnt based on my inability to come off steroids) then its not likely to start working.... time for changes


Labs are being run to check my liver etc to try and increase my Azathioprine from 50mg (which he says is really really low for my weight and disease activity) to at least 100mg, and paperwork is being started to get insurance approval to move me to Remicade instead of humira.

He wants another colonoscopy once i can figure out kidcare/transport for that

 

[shamrock15]

At least it looks like this doc is taking a serious interest in your disease and its proper management. Here's hoping remicade is approved and works quickly for you.

 

[Walt]

humira hasnt worked in the five months ive been on it...
then its not likely to start working.... time for changes

Hi Aideen,
sorry for your struggles.
I just wanted to add, me too, but instead of stopping Humi...
my bigdog GI has escalated my dosage to weekly.(doubled)

Just wanted to present another possibility for you to maybe consider?

I would like to hear from anyone with Crohn's disease that has enjoyed better response to Humira by increasing to weekly jabs?
Just looking for a little hope against the monster that is eating my life.......

wishing you well,
peace
Walt

ps
sorry to admit this, but corticosteroids make me not feel like me?

 

[aideen33]

Thats a possible option too Ive heard. Not quite sure why doc didnt want to go that route, other than that he feels like my response has been so minimal that id be better off switching. I wonder if its that he thinks remi will be faster response time for me and he is really really focused on getting me off steroids, which I appreciate greatly. He seems to be A. taking an interest in being more "proactive" i guess on treating me, and I definitely felt more listened to than I had been previous. I totally heard you on the prednisone though. Ive been on for almost a full year at this point and i ... like you say, I dont feel like "me" on them physically OR emotionally.

 

[Walt]

id be better off switching.
faster response time for me

couple more thoughts...
1 - once we stop a biologic, there is a good chance...
that we personally may not be able to go back on it moving forward.
(with a treacherous and currently incurable horrible disease)
or in other words, it's always too early to casually burn precious bridges!

2 - Both Remicade & Humira work by the same body mechanism
Yes, many good folks seem to have luck with one or the other.
(I have no dog in that fight, just skin and accumulating tissue damage.)
For lots of other good folks suffering, more like one... then the other. eek!

peace
w

 

[Clash]

There are several members on here that have stated it took about 6 months for humira to really kick in. I'll tag Mr chicken as it took some time for them.

I'd also agree with the above poster. Burning bridges with biologics can be tricky since a lot of people can't restart a biologic due to developing antibodies. So, stopping humira before you try adjusting the schedule or upping the dose could make those opportunities for that med impossible for the future.

My son started with remicade, we had to shorten the schedule, up the dose and add methotrexate which then had to be upped and switched to injection form.

I would just look at all the option before dropping a biologic after 5 months.

 

[Mr chicken]

DS was started on humira in April 2013 right after he reacted to remicade ( in remission)
He slowly slipped out of remission.
He was started at 20 mg every two weeks ( kiddie dose)
After two and half to three months the docs switched his dose to 40mg every two weeks
But it took until OCT till he was back to his normal self
He is now on humira every 10 days with Mtx ( due to juvenile spondyloarthritis )

Good luck

 

[aideen33]

I never really responded to the humira like .. at all... lol. Im still on it currently, as doc didnt want to stop it until we could get the remicade approved. I went to Quest Monday to get my labs drawn (new doc wanted to do CBC, CMP, liver panel which had been done but it had been long enough to re do, he also wanted a recheck of TPMT which last doc never did check, sed rate and CRP which also were never done, and run the quantiferon TB blood test.... so they sucked 10 vials out) and now just waiting on labs to come back so we can determine if and how much we increase the azathioprine and waiting on the insurance approval