On Humira for 3 months ,so far..need help

[stevereds]

Hey everyone..I've been reading lots of Humira posts etc.

Here is my story...wanted to know how others responded to Humira and how long it took them, if it all to feel better etc.

I have now been taking Humira for 3 months... On the every other week injection now.

When I started 3 months ago I had several fistulae. still do in fact.
In the very beginning Humira seemed to work somewhat, increased appetite etc. less fistula activity, But my fistula's have never fully closed, just lesss drainage and pain.


My question to all is....
How long did it take for you to notice results? is the 3 month mark period, too soon? Should I give it 6 months before thinking about going on the weekly injections?

I've read it can take as long as 6 months etc... or some don't even notice any improvements.

I think the weekly would help, but my doctor isnt ready to do that just yet.
I mentioned to him for me to take imuran, as I took that many years ago, and it seemed to help. But my Dr. is concerned with the infection and active fistula, the imuran w/ Humira now, might be too much for my immune system. if I can get the fistula's under better control, he might consider the imuran too.

So is 3 months too soon for me to get down on Humira? I am determined for this to work. And I'm trying to remain positive too.

any input or Humira stories or advice, feel free to add your input,
thank you in advance,
Steve

 

[beth]

I think by 3 months you will know if it's working, or not, and to get a feel for what it was doing for you.
I felt by about 3 months that it worked well for the first week after each injection but then my symptoms started to come through again. So I asked my GI if I could go on to weekly. The difference has been well worth it. Far from being another failed drug it has really kicked my Crohn's into remission.
So I'd really recommend asking your consultant if you can up the dose.

 

[dreamintwilight]

I agree with Beth. I felt better within a couple weeks after starting Humira (I had an internal fistula when I was diagnosed). I felt good for about about 2 months and then I was hospitalized for a partial obstruction. So, my doc put me on weekly Humira shots and then started me on Imuran.

I recently had a colonoscopy and CT scan and my fistula has cleared up and my inflammation has been downgraded to mild. So, I think the weekly shots are a good idea, and if it still doesn't help, I'd push for the addition of Imuran on top of weekly shots.

I know that perianal fistulas can be trickier than internal fistulas, but I agree with Beth. After 3 months, I think you should know whether or not the shots are helping. So it sounds like it's time for something to change.

Good luck to you! Keep us posted!

 

[stevereds]

thanks..
I'm thinking weekly will help more too. at the end of the 2 week cycle, the fistula's seem more active for sure.

 

[Kazters]

ive been on it since november and my inflamation levels have increased suring my last scope last months they increased themt o weekley as etehy found lots of new patching in my duadinum ;( im sick of it hoping it will work but i cant tolerate the other meds so i have to persevere my bc is really low as im still bleeding but consultant it adamant it will work just takes a while

 

[MikeinBklyn]

I was on the H for 9 months with very little fistula closure. My doc did not want to rush into a weekly dosage. I had noticed that things would start coming apart in 10 days. I suggested to my doc to increase the injections to weekly, but, we decided on every 10 days.

Bingo, fistula gone in 2 days. I'm taking the H every 10 days and I have my life back.

Everyone needs a certain level of TNF blocker to be effective. You should speak to your doc about a dosage adjustment.

Good Luck

 

[stevereds]

Hi Mike.. good news..I just today saw my Dr. and he approved the wewekly injections. I take my shot every Wed,. so today I took mine, and next week will be my first 'weekly' shot. the company Abbot will ship me another 3 month supply, to make it weekly imjections. I always noticed after a week or so, I would feel more sick again, more fistual activity. I have fistula crohn's. numerous fistula's on my butt ouch! lol.
I think this will help for sure.. I'm thinking positive thoughts for it.

in 2 days your fistula went away? wow. mine are pretty inflamed, so I think it will be baby steps to heal them.

 

[MikeinBklyn]

Steve,

My doc told me of a patient that had 20, yes 20, perianal fistulas. The patient was healed in less than a week. Like I had said, if its gonna work it will work weekly.

Good Luck

 

[stevereds]

thanks Mike..I got my fingers crossed. I think it will def help for sure. I did well on Remicade years ago, but cos of insurnace and cost, could no longer get it. so usually these TNF blockers work for me.

next Wed. will be my 1st weekly shot. can't wait. I dont mind the sting of the shot, knowing it will help my other ailments.

 

[Teresa T]

I recently started Humira. I had my introduction dose on the 16th and the next 2 on the 1st of next month. Then after that its everyother week. I dont feel anything yet....maybe a lil less pain but not much. I do seem to have a cough that im going to call about tomorrow and I got a slight headache about an hour after i took it. I will keep u informed if i notice a change. Good luck with your humira!!!

 

[aliciars]

I need to get off of Humira. I've been on it since Oct. Bumped up to weekly shots a month ago. Was doing 10 days shots for a month before that....nothings changed. I asked the doc last week if I could stop it, and he said not yet. We upped my Imuran, and want to see how that does (along with adding Canasa suppositories). He's mentioned Cizmia (?? the newer biologic) as our next to try. UGH.

Hope it works wonders for you at the weekly injection rate.

 

[Kazters]

im in the same position Aliciars but i have been offered thalidomide as it appeard Humra isnt working been on since november nothing is changing ;(