Humira Update

Instead of looking for the old thread I thought I would just start a new one.

I just took another Humira injection so I thought I would give an update.

Before I started Humira I was on 20mg Prednisone, 150mg Imuran and Asacol - 3 pills, 3x a day.
I've been on Prednisone almost four years. Could never get below 15mg without going into a massive flare.

I started Humira on Jan 1, 2008. I started weaning off of prednisone right away but not at at the 5mg a week like my GI suggested.
I got down to 10mg and was still doing fine but I was a little hesitant to go lower. I really wanted to give the Humira a chance to work.

After being at 10mg Prednisone for about two weeks I finally dropped to 5mg one week ago. I was terrified of a flare starting

BUT,

I am doing great. One or two bowel movements a day. No diahrrea, no blood no abdominal cramps, not even a stomach rumble. In the past stomach rumbling meant that I was headed for a flare.
In the past if I dropped to 10mg for prednisone I usually started flaring after just a couple of days.

I really feel GREAT! I am still worried about getting to excited because it seems to good to be true. I have also dropped to 3 pills of Asacol, once at night.

So far, so good. I will call my GI this week and ask her when I can stop prednisone completely. I'm sure she'll say to stop right away. If she does, I am going to stop.

I have to do a self injection of Humira once every two weeks. It is very easy. It administered using an injection pen. You hold it against your skin and press the top button. Count to 10 and your done. My insurance covers it and Humira sent me a CoPay plus card which covers the prescription copay that my insurance doesn't cover so I end up paying nothing.

Anyways, there's my update for now. I will update again at a later date.

Post Edited (Hobo) : 2/13/2008 2:30:08 AM (GMT-7)

Hey Hobo - thanks heaps for the update. Great to know that the Humira is working for you.

With regard to the prednisone withdrawal, you said you'd been on at least 20mg for the past 4 years. Be very careful dropping from 5mg to nothing. Nearly all GI's will get you to taper by 1mg a week, or sometimes a fortnight from 5 to 0 due to the massive amount of time you have been on it.

For me, the Abatacept helped me get down to 5mg pred, but the withdrawal symptoms from 5 to 0 were incredibly unpleasant, both physically and mentally. Depression, absolute lack of appetite, weight loss, vomiting, D... The list of side effects was pretty long for me.

Hopefully you don't get any of that, but just be wary of dropping pred quickly after being on it for so long.

I just reread my post and made an edit. I am completely off of Imuran. I am taking 3 pills of Asacol once a day.

This is wonderful news. I am glad to hear about the Humira working. I was supposed to start it but, my dr. wanted to check to see my anti-body levels of Remicade. I am waiting on those results and then, we'll see.
She is saying that I might have to go on a higher dose of Remicade to see if that may help my remission.
All I know is that now I am on Prednisone and I want to be off of it and soon!!
Thanks for this update!

OK, another update.

Severin, you were correct. I was doing fine at 5mg of Prednisone but when I went to 2.5 I started to get some blood. After a couple of weeks my bowel movements increased to about four a day.

I visited my GI last week and she agreed that the tapering was too quick. She bumped me back up to 10mg prednisone for the next four weeks. At that point I am going to decrease by 2.5mg every month.

Humira was and still is working but the prednisone taper was too quick.

I take another injection this Tuesday.

I will keep posting updates.

I'm so torn, as far as trying Humira... now were you on Remicade prior to the Humira, Hobo? I
f so, what happened with it, why are you off it? And the others on here about to start Humira, same question- did you stop responding to remicade or just not try it at all?

Thanks Hobo for sharing your experience with Humira. My husband is also on Humira. So, it is interesting to compare notes.

I know a few mentioned that they would like to know more about Humira in UC patients, so please don't hesitate to ask...I'll answer the best I can.

Hobo, when did you start seeing results with Humira? Do you know if it's the Humira that's helping you or the predisone?

Good luck with the Humira and I hope you can successfully wean yourself off the predisone. Will keep my fingers crossed for you.

princesscolon and superdeejayanna, I hope you both are continuing to do well on Humira? Are you both on predisone as well?

How long did it take your humira to work? I have been on it since december and I'm not sure its working for me.
Holly

entocort
humira

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Post Edited By Moderator (tjf) : 4/13/2008 6:09:44 PM (GMT-6)

I started Humira in December.  It's been four months now.  I have no issues with it.  I have 1 BM per day, occasionally 2. 

I could never get below 20mg Pred without flaring.   My GI would not start tapering until I was on Humira at least four months.  I hit the four month mark last week and started the taper on Thursday (2.5mg every two weeks).  So far, so good.  In the past, the symptoms appeared about two days after starting the taper.  I'm keeping my fingers crossed that the taper will go well.

Hobo

It's great to hear you are doing so well on Humira.  about your pred taper.  I, too, have been on pred for a very long time. I have been on pred for 5 years now, and flare every time I get below 10mg. I am on Abatacept trial now, so im hoping that will allow me to get off it. 

When you get to the 10mg mark, I think a 2.5mg drop is WAY too big.  Not only do you risk flaring, but the withdrawal is so bad. If I drop by 2.5mg I am virtually unable to walk and get awful night sweats, cramps, depression. List goes on and on.  PLEASE PLEASE get 1mg tablets. I would come down by 1mg every two weeks, and even slower if you get  bad withdrawal. 

Believe it or not, the last time I tapered, I came down from 4mg to 3.5mg - only 1/2 a mg, and I sufferered severe withdrawal.  I am convinced, if I reduced by any more in one go, I would have flared.

Best of luck.