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I DON'T KNOW IF HUMIRA IS WORKING

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Ulcerative Colitis
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Posted 6/9/2014 1:53 AM (GMT 0)
I'm in the middle of a flare up and took my "starter kit" humira shots (160 mg) on 5/29. I take the next 80 mg on 6/12, but I haven't noticed much difference since the 29th. My bm's seem to start around 7 pm and I'm in the bathroom 5 to 10 times until 3 or 4 am. Then it's quiet until after breakfast around 9, then things quiet down until night again. No control, very loose or watery bowels. I'm tapering off of prednisone to 5 mg/day now and taking 1 pkt of cholostyremine/day.

Don't know if the humira just isn't working, or am I expecting too much. Can anyone shed light on how this works.
Posted 6/9/2014 2:29 AM (GMT 0)
It doesn't always work overnight. It may take a couple of months. Don't give up yet.
Posted 6/9/2014 2:37 AM (GMT 0)
You have to give it about 3 months. You might see some improvement after the loading dose . Be patient!
Posted 6/9/2014 3:29 AM (GMT 0)
Thanks for the input. Once again life gives me the lesson to learn....patience! I wonder how many uc'ers there are???? Maybe it would be smart to invest in Depends stock!
Posted 6/9/2014 3:36 AM (GMT 0)
Depends stock sounds like a GREAT idea to me. I just bought another package tonight. Fingers crossed its my last one before surgery, lol.

Humira can take a while. I'll send out prayers and good vibes that you get results after the first couple doses! Some people get results quicker than others. And tapering off Prednisone when you arent getting help from Humira yet seems dangerous. I'd ask your Doc if going back up to 20 and re tapering while waiting for the Humira to kick in, might be a good idea.

Or has your poop been steady like this for a while? despite the prednisone?
Posted 6/9/2014 4:46 AM (GMT 0)
Thanks embers, to answer your question--the pred doesn't seem to have made a difference. And, I don't know what the cholostyremine is supposed to be doing! I thought it was to "firm things up", but that doesn't seem to be having any impact and I have to "manage" when I take it in relation to my other meds, that becomes a juggling problem.
Posted 6/9/2014 4:56 AM (GMT 0)
I personally hated the cholostyremine. It made me feel TERRIBLE.
And yeah.. its suppose to help with diarrhea. Didn't help with mine.

As for prednisone: how many poops a day were you having before starting pred? and after?
Also did you have blood and mucous before prednisone? after starting?
Posted 6/9/2014 3:15 PM (GMT 0)
I've not noticed a difference with the cholostyremine. I've been on pred for so long that it's hard for me to remember what it was like before. Reminds me of the joke about the guy who was in the desert banging on the lid of a ash can when someone asked why he was doing it and he said to keep the elephants away. The person said, "there are no elephants in the desert" and the man responded, "See how well it works!"

Sometimes I think I have PTSD, one day just blends into another....mornings are ok; late afternoon and evenings are when I have "The march on the river Kwai". Used to be 15/day, down to about 8 to 10, never any blood or mucous. The way I gauge how I'm progressing is how often I have to buy incontinence diapers (with tabs); going thru 28 in about 2 days, now may go a little longer until I have to buy another supply. This illness ain't cheap either!
Posted 6/9/2014 4:30 PM (GMT 0)
I don"t know about Humira, but some biologics take a while...I'm on Simponi and it's been 4 months and it slowly has taken me to about 85% and getting better each week....the worst thing is the wait, I know....we all want it to work yesterday. Some people get fast relief, others it takes time.

Just keep in mind it's a slow process, and one day you'll wake up and say "hey...it worked yesterday!"
Posted 6/9/2014 4:40 PM (GMT 0)
WOW! almost 40 yrs and the good news is you're still kicking! That's a lot of "one day at a time"s, but the alternative ain't that great...so, thanks for the support and for your positive outlook!
Posted 6/9/2014 4:49 PM (GMT 0)
hi miss prim, i can't offer any advice on humira (just started remicade myself), but i can totally relate to the nighttime toilet activity. it's almost like my colon goes to sleep during the day (i'm thankful for the relief!), and then, like clockwork, at about 6pm i start getting gassy and then the bathroom runs start shortly after. for me, i think the remicade is working and it does seem like the BM #s are going down, and i am able to sleep more now (getting up 1-3 times during the night). but i am confused as to why symptoms start and continue in the evening, every day... what is it about that time? anyone know?
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