Age 22 Remicade deemed ineffective Starting Humira?? Worried

[TrulyBlessed]

My Name is celeste. I was diagnosed with crohns disease alongside JRA at age 8. Since age 10 i have not been in remission.. i am currently 22 yrs old and had my son at age 19 where the complications just threw my crohns into a major flare up. after having an appendectomy at 5 mos pregnant, i then had to have an emergency c section at 29 weeks and then immediately following i had to have a colon resection.. since 2009 when my son was born i have been hospitalized over 10 times and when having an infant/toddler at home to support its hard on me and his father.. since My resection ive had sever diarrhea which caused me to lose a significant amt of weight and as of yesterday i weighed in at 98 lbs. Ive been on remicade infusions every 6 weeks for 13 years now and has worked so well for me up until recently where i noticed something just wasnt right with my body(lg amts of blood in stools, fevers of 99-104 , fatigue, severe cramping, migraines, fainting) so upon sepsis diagnosis in emergency room, they deemed the remicade inneffective for me now.. my body is now rejecting the infusions. my GI wanted to try CIMZIA but i have NO INSURANCE so paying out of my pocket for that treatment just Isnt an option. Im now being told to try HUMIRA from which my GI tells me is in the same family as REMiCade and may not work.. IM extremely worried.. i dont know what to do as im almost at the end of my rope.. can anyone help.. im picking up my humira starter kit tomorrow 1-9-13

 

[Angrybird]

Hello and welcome to forum.

I must admit I am questioning how well the Remi has done for you over the last 13yrs considering you have not been in remission since age 10 and the op you have had to have - has this been the only med given to you? Have you ever been on steroids? When was the last time testing was done to check on how things are looking inside? I have seen others here whom this has failed who have then gone on to have Humira with success, whilst it is still a biologic it is a different med so it is possible it may work. To get further info on this then do have a look at our Humira sub forum: http://www.crohnsforum.com/forumdisplay.php?f=59.

Another thing that may help is something like enteral nutrition - this can really help calm the tum down whilst also getting the nutrients you need into the body. I would also look into getting your vitamin levels checked when you can as it is common with crohn's to have deficiences in this area.

Please keep us updated on how you get on.

AB
xx

 

[traci0531]

Gosh, I feel so bad for you. I am starting Humira soon. I read that it may be effective if Remicade no longer is on their website. I've also seen people say taking it with Imuran seems to help its effectiveness. It sounds like you could really use a break. I hope the Humira helps, and you start feeling better soon!

 

[TrulyBlessed]

Angrybird Yes ive been on corticosteroids, vioxx, naproxyn for pain, flagyl, asacol, i mean you name it ive been. The Remicade was sort of in my opinion a stabilization treatment and id assume because i didnt go into remission that it wasnt as effective as far as taking away my symptoms. Im very malnourished (been tube fed) quite a few times, Am anemic as have been since age 13 and have had numerous blood transfusions.. one of them just in december.. I had a colonoscopy last yr and docs believed that it was progressively getting worse and the appearance of more polyps was apparent... THANK U SO MUCH FOR THOSE LINKS IM DEF. GONNA CHECK THM OUT

traci0531:: Honestly im stronger than ever despite this sickness and hopefully one day ill go into remission because my husband and i are ready to start a family and u know HEALTH FIRST.. i have my son for now but god knows im ready.. i believe that this disease has made me strong but i also believe that my son gives me the courage to get through.. I do pray that the humira is effective and i joined this forum because at times my doctor just doesnt explain enough and when it comes down to it i believe i need a support group outside of my husband which is my only lifeline at this point..


I want to thank you girls for taking the time to respond to me and help as much as you could
I truly am appreciative.


******also if uninsured would they prescribe the pen or the syring i have a fear of SEEING the needle not so much feeling it so am preferring the pen.. ANY IDEAS./?
~Truly Blessed~

 

[EthanPSU]

What makes you so worried about Humira?

I went threw the same medicine as you almost, I started on pills but then was moved to Remicade which I took for 6 years. Eventually just like you my body started rejecting it and I had to be taken off. I started Humira a half a year ago and it is soooo much better then Remicade in my book. It so simple to do it by yourself and what not. And the (potential side effects) are less than Remicade, even though i've experienced no side effects yet.

Also, You should def get the Humira card, if you qualify it will lower your co-pay for Humira to $5. I just found out about the card a couple a weeks ago and was paying $50 each time before, now I only pay $5.

"also if uninsured would they prescribe the pen or the syring i have a fear of SEEING the needle not so much feeling it so am preferring the pen.. ANY IDEAS./?"

I am sure you were prescribed the pen, it's the most common way to take it. And you do not see the needle at all with the pen. It does sting a bit but you get use to it.

 

[TrulyBlessed]

ETHAN, what makes me so worried i guess is that my medication assistance rep keeps telling me that usually ppl who go from remicade to humira end up going back to the remicade at some point .. and knowing that the remicade stopped working itd be pointless to go back.. The Humira kit wont be in for 3-4 wks from what the pharmacy told me yesterday so now im on prednisone 40mg / day for 2 weeks and then less and less to ween off.. but im glad to hear that its working for u after having already been on the remicade as well.. that makes me look up a bit more. Thanks for all the advice i appreciate it

 

[Pie-Guy]

Remicade worked for 1.5 years for me, Humira worked for about 2 months. I think I am unique though. My immune system is top notch which means Crohn's hit me hard. My Gastro guy said I was pretty unusual (most of his patients don't get hit so hard with it).
The difference between Remicade and Humira is that Remicade is made from mouse protein and Humira is made from Human protein (or that's how I remember it being explained to me). The theory is that Humira has a smaller chance of being rejected because of the human element.
After Humira failed I was hospitalized and had prednisone via IV. That didn't work either. I won't tell you what happened after that as it might depress you, however, I am now Crohn's free (for the most part) and have my life back.

 

[TrulyBlessed]

HI PIE GUY, uhm well yeah crohns hit me hard when i was little as well .. i passed out at mall and ended up waking up in the local childrens hospital where i stayed for 5 months until the doctors figured out what was actually wrong (ended up taking samples of my bone marrow for testing VERY PAINFUL AT THAT AGE if youve never experienced) .. u name it i had it. psoriasis, empetigo, hemmorhoid, warts, i just at that point was catching everything under the sun with my crohns came JRA so severe that i was in a wheelchair and couldnt walk.. my wrists were so swollen/inflamed that i couldnt use a pencil in school..so severe that at the age of 8 i had my own handicapped sticker in my moms truck. when i was 10 i started remicade every 4 weeks up until just last month where my body was said to have been rejecting it.. so i got a good 12 years out of the remicade which according to my doctor was AWESOSME...im not a little girl anymore so ive learned to put on my big girl pants and take whats come to me so if you wouldnt mind id actually like to hear what it is that ended up happening..

 

[Pie-Guy]

Well I am new to these forums so I actually took the time to type out my story - http://www.crohnsforum.com/showthread.php?t=45480