Humira- how long till it works??

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my little penguin

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Ds has been on HUmira for 12 weeks.
3 shots at 20 mg
and now 3 shots at 40mg
not really seeing a big difference after he gets a shot.:voodoo::voodoo::voodoo::voodoo:

not terrible but not really "good" either.:stinks:

ANy idea on how long it takes to work?
I assumed he started over again when he went up in dose since his sed rate was going up prior to that.
 
My daughter took it for juvenile arthritis (now diagnosed ankylosing spondylitis and crohns) and it took 6 months before she was feeling a little better. At that point we added methotrexate and then in another 3 months she was feeling significantly better. It eventually helped so much that she became a completely normal, happy teenager again until it stopped working almost three years after she had started it.
I don't about doses because she was on the adult dose at 13 (she was on Humira until she was 16). She did have it weekly though, instead of every two weeks.
Good luck, I hope it works faster for you than for us.
 
It has kept EJ on a fairly even keel for over two years but has never given him total remission:(. He's been on weekly for the last 6 months or so. Good luck MLP!! I have no doubt you have looked at every piece of info there is about the expectations of Humira! If you are asking, I am afraid you're probably losing confidence!!
 
Just waiting for it to work with a kid who is nauseous daily
has stomach cramps
fatigue
leg pain
headaches
and just plain feels like crap.


3 months of blah...
has me more than frustrated/tired and trying not to "give up " hope too soon
but not seeing the shiny light at the end of the tunnel right now.

Since he doesn't have any other options left.
 
His Gi is conservative which is a good thing.
Since he is not bleeding or having diarrhea .
we wait to see if it gets better with the higher dose.

We could up to weekly I guess.
Not sure on MTX since he is male and doc is trying to avoid due to tcell lymphoma risk.

Also not sure about mtx since he was on that last summer and failed it miserably.
He couldnt wean off pred at all while on it and kept gettting vasculitis while on it.
Add in mtx made him horrible fatigued.


6-mp was worse since it went to his liver.
 
Would there be any point in attempting exclusive EN to give him a bump into remission? Remember, CIC's daughter wasn't quite in remission with remicade alone, did 6 or 8 weeks of EEN (while continuing remicade) and that seemed to do it for her.
 
That's a really difficult situation, I'm so sorry. I really hope it works soon for him, poor kid!
 
Hi, I have been on Humira for over 6 years, I was one of the subjects for the experiments to see if it would work for Crohn's disease, as it was already being used for arthritis. At that time, I took very extensive notes, on how many times I went to the washroom and the weight I was gaining. Within 2 weeks, I noticed significant increases in weight and decreases in washroom visits. This is not to say that it solved the problem, I still very much deal with Crohn's and the effects daily, and make several trips to the lavatory, but at least it is not 20 times a day and I am very rarely in pain. Anyways, I wish your son the best of luck. Cheers! Alex Dale
 
Hi, has he tried LDN? Maybe that will be a good option for him
Good luck, I hope he feels better soon.
Hugs to you both
 
Not really a big improvement but some
He is less
Tired
Less nausea
Less stomach cramping
Prolapse is slightly better
BM slightly improvement
Overall better than 20 mg
But not there yet
 
I'm sorry to hear that he's not feeling better yet. Would your GI consider adding something more benign like LDN to the mix? I don't know if this is something you've tried or would want to but just a thought since there are so few options left. Hope it kicks in very soon.
 
Sending hugs your way! If you are seeing some improvement maybe weekly would bring it all on around.
 
I just started Humara yesterday and today I have not had a loose stool yet any stool at all makes me a nervous not sure what to think. I have usally been in the bathroom 5 or 6 times already!! I woke up this morning so stiff and my neck could hardly move!!!! Much more pain today.
 
Coltyn has been on Humira for just at a year now. He's done fantastic and it took about 3 months to really see improvements. We've been very fortunate that he didn't do a ton of meds before humira, so his body didn't have other meds trying to help. He does experience more constipation but with a regular dose of miralax, he does ok. Good luck!
 
Left a message with Rheumo and Gi to update
It will be a while since they have to chat before one of them calls me.
DS is complaining of daily leg stiffness if he doesn't move as well as weakness in his legs if they are already stiff and he doesn't start to move them.

Hoping Rheumo has some answers .
 
My Humira took like 6 months. I went to see my GI around that time and told him I saw a very slight improvement. He then put me on Aza w/ Humira and it like jump-started the Humira and pretty much put me in remission. Ask about a combo treatment with Humira when ur GI calls back
 
MLP,

Sorry the humira isn't working yet. Did they do a "loading dose" at the beginning? I don't have any suggestions since Ryan hasn't started it yet. Has he had Remicade? How did he do with that? I hope the humira starts working soon!
 
It's working some just not enough .
He did not have a loading dose since he was doing so well on remicade the Gi thought it would be an easy switch.

He can't have remicade since he had two allergic reaction - lAst one while on iv steriods .
Five of his specialists all agreed no more remicade :(

He just needs a little more boost I think but....
Just waiting for a call back
 
Ryan had the reaction to remicade too. We started Humira yesterday...knots in my stomach over it! They did do a loading dose for him, but it has been about 9 months since the remicade. We didn't switch straight from one to the other. Ds isn't doing methotrexate, is he? Maybe that would boost the Humira.
 
Waiting for Gi and Rheumo
His Gi is out this week
So either the nurse asks a doc not familiar with his case or we wait.
I told them I would wait .
I am sure I may regret it by next week.

He is not on Mtx with humira.
 
It worked quickly for Alex, like a week, I think, but he'd been coming off Remicade failing so it was a boost he needed, and we did the loading doses. But his protein stayed stubbornly low until a few months after we added 6mp.
 
Ugh! Why does Murphy's Law always raise its ugly head when you least need it. Hmmm, I guess that's why it is Murphy's Law! :voodoo:

Thinking of you and your lad mlp. :ghug:

Dusty. xxx
 
plan
stop asacol - apparently it can cause alot of his stuff :voodoo::voodoo::voodoo:
see rheumo
blood work
then call back revisit in a few weeks or sooner if needed:stinks:
 
Frustrating to not have a 'solid' answer but, it would be nice if simply removing asacol relieves his symptoms... one can hope! I am really hoping that does the trick for him!!
 
What is your feeling about how much Asacol is playing into this mlp?

Thinking of you guys. :ghug:

Dusty. xxx
 
Hard to tell
DS didn't get the this Ibd memo
Gi feels the asacol was causing an issue but remicade was strong enough to counter act it.
Since his humira is still building up that trying to fight the issues the asacol is causing .
Stop the asacol and the humira will be strong enough to "fix"

His stuff.

DS snowballs
The intestines spasm causing him to have more attempts but not be productive .
This cause his prolapse to be inflamed which worsens everything
Causing constipation which leads to more stomach aches and nausea.

He was on asacol HD .
We saw an improvement when we stopped the canasa so hopeful
This may improve things even if its a little bit
 
I hope so too mlp...:ghug:

Everything, and I mean everything, crossed for you guys!

Dusty. xxx
 

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