Humira query

[ruthymg]

I know someone else has asked a similar question but there weren't any replies and so I thought I would ask again. Does anyone here have experience of taking or know of someone who has taken Humira? and what was it like? did it work? etc

I saw my gastroenterologist today and as my husband and I may want more children, he strongly advised against having the Methotrexate and thought the Remicade may not be such a good idea too. So he advised I try Humira which is thought to be a safer drug as it was constructed from a fully human monoclonal antibody, while Remicade is a mouse-human chimeric antibody.

Its been approved in the US for arthritic conditions and spondylitis. It won't become used for Crohns over in the UK for about 3 months though as its still waiting approval to be used for crohns and colitis.

I have read a little about it on the Wikipedia site and the Humira site, but wanted to know peoples experiences also. Any info would be greatly appreciated.


Ruth

 

[fof]

There is another drug called Etanercept (trade name Enbrel) which I am going to start soon It has been ok'ed for spondylitis (which I have) but I am waiting to hear from the gastro doc if it is ok for crohns.
I was diagnosed with crohns a month ago over in Galway Ireland after having an emergency rt hemi-colectomy. Since getting home to Somerset I havn't seen anybody about the crohns. (the NHS is slow). Enbrel is a self injection once a week, it seems to me that a little and often is a good way to go.

Andy

 

[ruthymg]

Thanks for the info, I haven't heard of this drug before. I'll certainly look into it.


Ruth

 

[meapache]

Hi Ruth,
My daughter Monica has been taking Humira since i believe last july, after she tried remicade and had an reaction, she has a fistula which she had two office procedures, finally had to have hospital surgery and got the stoma to rest her bowels, the humira seems to be doing its job, but it works slower than remicade, she's gained weight, the fistula has no pain and is shrinking. was the size and shape of a large pear, very red and pulsating wetness, she now changes her gauze once a day, fistula is now half the original size, we just bought some alginate pads which helps to speed up the healing, her only complaint is Humira sometimes burns when i inject her, otherwise she is doing great with this medicine, she takes 6MP, tries to eat the right foods, water, etc. she can't wait to get rid of that stoma, the fisula has to be fully healed before the reversal operation, hopefully another four months, doc said six, also said humira is better then remicade because of the human antiboti...

 

[ruthymg]

Hi Meapache, where abouts are you? Your daughters story almost mirrors mine in that I too had multiple fistulas and had a stome done to rest my bowel. I was also told six months. I have had my stoma now for 8 months almost and I have just been told my fistulae have healed and I can now have the reversal surgery so resting the bowel has worked for me. I do hope to try the Humira though to try and prevent more of them. Send my best wishes to your daughter, hope all works out for her and thanks for the info.


Ruth

 

[Mozam]

Hey Ruth,

I posted a similar thread to yours back last year sometime, can't remember when - summer time I think.

A friend of mine (young guy, early thirties) has had dreadful Crohns problems. More ops than a US Marine, and more tablest than a pharmacist can shake a stick at. Anyway, he went on Humira back in Summer 2006 and he became a changed man. No pain whatsoever, boundless energy, bouncing with confidence, you name it. Apparently this drug just zaps ANY inflammation of ANY kind - whether it's external, internal etc. I keep in regular contact with this guy and he still seems to be doing fine - I dunno if he's maybe just been a test patient or whatever, seeing as you've said the drug hasn't had approval here yet - maybe it's because we're in Scotland? The old Postcode lottery thing? I dunno.

Anyway - hope this is of some interest.

Cheers

Moz x

 

[ruthymg]

Thanks Mozam, thats definately interesting to hear, as I said, I do hope to try it when its approved but its helpful to know that other people rate it well. It may well have been approved already in Scotland, I'm not sure though. Maybe your friend was a guinea pig as you say, whichever, it seems have been the right drug for him. I hope he continues to do well. You ought to see if he'd be interested in posting his experiences with Humira here on this site. Worth trying

Ruth

 

[meapache]

Hi Ruth,
just saw your reply, My daughter Monica and i (Samantha) are located in NYC, her doctors are at Cornell Weil, I'm so happy your fistula has healed, monica is almost there with the Humira, i treated her to a box of Alginate pads they help absord and dry up the fistula area faster, she's not in pain thank goodness, we think by june the area should be healed completely, i could just punch her #1 doctor in the face, he was so COLD at first, he hurt her feelings right before her surgery, i put him in his place right then and there, #2 and #3 are great, really trying to give us all the info needed to help her heal, and get her reversal done, Monica wants to go back to work...Question for you, did your doctor do an X-ray of your fistula area recently, doctor #1 wants one done by doctor# 2..take care Sam

 

[ruthymg]

Hi Meapache, I had an MRI done in December last year. I got the results of that MRI about 3 weeks ago and was told by my GI that things hadn't healed enough, so I had to wait another 4-6 months. That same week I also saw my surgeon and I explained to him that I had had that MRI , like 2 months prior and surely things must have healed more since. He agreed with me and so last week I had a general anaesthetic for an internal examination with a scope to see how the fistulas had healed. I had barely just woken and my surgeon was stood at the foot of my bed with the fantastic news that all had healed well and I can have the reversal.

The Alginate pads you mention aren't available over here. I got sick of asking for something to soak up the drainage from my fistulas. Each time I visited clinic I was told I could have some lint dressings but that was all they had. I eventually just resorted to using sanitary towels.

Its good to hear that your daughter had someone to stand up for her. So many times you hear stories of medical staff being unprofessional when people are at their most vulnerable. I had a bad experience with my first GI (who I was under for about 6 years) he had no idea what he was doing basically and so I went to my GP for a second opinion and thats when I got my diagnosis. My GI doc I have now, who I've had for about 5 years (I was under another doc when I was first diagnosed)is really good and I trust his judgement. I also trust my surgeon and know that between them they are doing a wonderful job of just trying to help me get better. I hope your daughter has positive effects too. I'll keep my fingers crossed.


Ruth

 

[meapache]

Hi Ruth,
thanks for the reply, Monica will be seeing doctor #2 this thursday, and she'll ask about the MRI/internal examination, he'll be truthful with her as how to proceed, since the area hasn't fully dried up/healed yet, doctor#1 is a top surgeon believe or not, HE just has no bedside manners with his patients male or female, the alginate pads are hard to find here also, have to special order them pay out of pocket, because they feel she could just use regular gauze, but they stuck to her wound, which at first extended from the very top of her butt down 6-8 inches, they had to clean up the site which was originally thought to be a hemmoriod gone bad..i'm just happy she not in pain >humira< not taking any more pain killers which she almost became addicted to, scary..happy for you also...Sam

 

[Ilysha]

Hi Ruth,

I just got a note from a local ccfa group that Humira has been approved in the U.S. for Crohn's. Hope that speeds up the process in the UK too.
Here's is the link

http://health.msn.com/healthnews/articlepage.aspx?cp-documentid=100156880

Best,
Ilysha

 

[ruthymg]

Hi Ilysha, thats great news, thanks for the link.


Ruth

 

[Wiles]

I was on humira for a while. The first summer I was on it I felt the best I had since I had been diagnosed several years earlier. It was great while it lasted. Eventually it started to lose it's effectiveness. I was in a clinical trial for humira, I was removed after I had a flare up, they considered my treatment a failure. I've heard of other people doing very well on it though.

 

[marcia]

I just returned from my GI's office with a prescription for Humira. Of course since this is newly approved for Crohn's my pharmacy has to order the pens. I should start later this week. I am very excited to see the results. My two options were either Remicade or to try Humira. Since Humira injections can be done at home myself I opted for that route it will be much easier with my three year old son. I will update everyone as soon as I start.