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Remicade, Humira...now what do I try?

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Crohn's Disease
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Posted 12/29/2011 2:09 PM (GMT 0)
So, I have been on Remicade in the past and developed antibodies.  I was switched to Humira and within a couple of weeks developed a real bad flare.  My GI switched me to weekly doses of Humira which has never helped 100%.  I still don't feel perfect.  Lately I have had bad skin problems (see my other posts) and I am thinking that the Humira is causing them.  I see my GI in January..but here is my concern.

If the Humira isn't working and I can't take Remicade...where do I go from here.  I have been on every type of drug there is and have had really bad side affects from them all.  Remicade was the first real helpful med but can no longer take that.  I know I can possibly switch to Cimzia but is that advised if 2 biological meds have failed.  I would think the odds are low that they will work.  I haven't tried MTX but that one really scares me and you can't have kids while on it and we are probably going to start trying to have kids within the next year.  Steroids gave me bad side affects, Lialda almost put me in the hospital, Cypro, azacol, asulfadine, and countless other meds haven't worked.  I felt Remicade was my last attempt and now I feel like I have no where to go.

The sad thing is that I only have a mild case of CD.  I haven't had any surgery on my intestines and have had no fistuals, strictures, or any of the things most of you have had.  My GI is really good but I think he is almost at a lost also.  He is probably going to tell me to continue the Humira until I see the derm but I don't feel like it is helping much.

I am actually feeling a little scared like I will have no meds to take and I know the results that that can give.  I went for years off meds and I regret it.  Before going off the meds I was able to tolerate them.  By going off them, my body probably built up a natural tolerence and now hardly anything helps.  Has anyone experienced this and if so, what did you do?  I know there are clinical trials but that is a short term solution, not long term.

I think I needed to vent a little but any help would be appreciated.

Posted 12/29/2011 4:50 PM (GMT 0)
Hey JavaJay,

I am having the same issues as you and have taken the same meds.

The only way that humira has worked for me is to take 2 shots weekly. And I feel good tummy wise.  Yes my skin hurts and I have eczema and psirosis (sp?), but my tummy is good.

Long term?  I don't know if this will last or if there will be side effects.  But it might be worth trying if your doc agrees.

Its not ideal.  But with these meds what is?

Best of luck,

Karine

Posted 12/29/2011 7:12 PM (GMT 0)
I was in the same spot as you - remicade, humira (skin issues - severe plaque psoriasis), and now onto Cimzia. I've been on cimzia for about 6 months. It's helping. I also started taking 6mp, which in combination with the cimzia is doing a much better job than the cimzia alone. In fact, cimzia is working SO MUCH BETTER for me than humira ever did - I wonder why I was on humira for so long. I feel like all it did was cause me problems (the psoriasis has not gone away at all) and it didn't even help the CD that much.

Try the Cimzia. It might do you more good than you realize. Just because you fail one or two biologics doesn't mean you're totally out of luck. They all are similar, but have a different component that might work for you.

Good luck!
Posted 12/30/2011 12:35 AM (GMT 0)
I'm in the same boat you are...mild/moderate Crohn's and trouble finding an effective med. I worry what's going to happen when I've literally tried all the meds. I finished my loading doses of Cimzia, and it's definitely helping my intestines. I've had migraines and nausea as side effects with it, but it was better with the 3rd dose, so I'm hoping the one in January is better. I think it's worth a try.

MTX will be the only one I haven't tried, and I find it scary too. But I'll cross that road when I get to it. I keep hoping something new will come out.

In the meantime, I've been working with a naturopath who has helped minimize some of the side effects from prednisone and the cimzia, and I'm hopeful that perhaps the combination of it and the modern drugs we'll find a balance that gives me some long term relief. I really feel some of supplements and changes in my diet have helped shorten my flare.
Posted 12/30/2011 7:51 AM (GMT 0)
Why not consider LDN?

I have now used LDN for 4 years+ and have done great all the time. I have lately changed to gluten free diet, and am feeling much better.

Read what this doctor says about LDN: (scroll down to Autoimmune disease if you don't want to read all, and read from there and down)

http://fourfoldhealing.com/2010/06/08/moods-and-the-immune-system/

you could also go to fb and to a group named Got Endorphins

or read more at
www.ldninfo.org

www.ldnscience.org

the last link is super for your GP if you want to be written a script. Good luck! //Bee
Posted 12/30/2011 1:03 PM (GMT 0)
Thanks tsitidawg and BeeSting.  I forgot about LDN and will keep that one in mind.  Filling the prescription might pose a problem but I will deal with that.

Tsitodawg, I know many people add other meds to humira.  I have been on both 6-mp and imuran with adverse affects from both.  I think overall I will try the cimzia route if my dr wants to switch me off Humira.  If that doesn't work, I might go LDN but that one will take some convincing in my part.  I don't think my dr is a big fan of that one.  I don't know if he doesn't know what it is or if he is still waiting for more information.

Thanks everyone for helping to lift my spirits a little.  I am starting to see some light at the end of the tunnel again.  As for my rashes, I have tried putting some extreme healing lotion on the rashes on my hands and that has kept away the itching.  I am going to try it on my legs next.  It isn't healing the rashes but at least it is helping with the itching.

 

Posted 12/30/2011 8:12 PM (GMT 0)
There is a therapy their not offering in US at the moment but I have to share with you. If you get the opportunity ask for and try apheresis, leukocytapheresis. It has finaly gotten my CD in remission it´ll come back as this isn´t a cure but now it´s in remission. I´ve also have had Remicade and got an autoimmun hepatitis from it, am on Humira for my psoriasisartritis and it helps for that but not for my CD. Have tried many other meds with either no effect or bad sideeffects so I was on ways end when my GI asked me if I could consider trying apheresis. And it worked for me. I´m not saying that it woks for everyone but there are studies that claim it to work as good as preds and that without the preds ideeffects ( for me that was an argument good enough).

How long have you been on Humira? perheps it needs more time to kick in?

Take Care and good luck!
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