Feel like I am running out of options

Hi everyone,

I was diagnosed with Crohn's about five years ago and since then have been on Remicade and Humira. I built up antibodies to Remicade, and only knew due to severe muscle and joint pain that was later confirmed by the blood test (my stomach issues have been fine for a few years). I then came off of Remicade and the joint pain went away after a few weeks. After being on Humira for a few months now, I am starting to have the same muscle and joint pain again so my doctors want to take me off of Humira and put me on something else. Does anyone know if pills are effective, I just feel as though I am running out of options and don't know what to do next.

I posted this in another thread, in another IBD section, but thought to mention a couple possible other options if they could help. If not already, you could ask your doctor for a prescription of low dose naltrexone (LDN) The medication seems to be little know by most doctors but helps some with IBD conditions, and has few side effects

Doing a google search one of the first results to show was this:

"A Case of Remission from Crohn's Disease with Low Dose Naltrexone LDN "

http://www.drdach.com/Crohn_s_LDN.html

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There is a physician in the UK that has been successfully using a liquid diet approach for Crohns patients. Once remission is reached, trigger foods are searched for. Dr. Hunter's sight can be seen at:

http://www.crohns.org.uk

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http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html

If you haven't been on imuran previously, it's certainly worth a shot esp. considering ur circumstances. When I was first diagnosed w/ crohns about five years ago I was on imuran for about two and was in remission for most of that time. If you go the imuran route, you will probably have to contend w/ the occasional prednisone script, which could suck. (Rounder face, weight gain and irritability in my case)
Another suggestion which I personally had success w/ would be the scd diet developed by elaine gotshall.
Pills are certainly effective. You just may have to shop around a bit, tweak the doses etc. Many people w/ crohns are successfully treated with pills for years and have never had a remicade infusion or humira injection.
Good luck

Try not to get on hung up on what's 'best'. Believe me, the story on remicade hasn't been written yet. Imuran on the other hand is very thoroughly researched and generally considered quite safe.
I certainly can sympathize though, it sucks having to go off a med that was working well for you.

Here's what we've been doing for my daughter. I know everyone is different, but if there's something here you haven't tried, it may be worth a try. She was diagnosed at 13 with severe Crohn's last year after 2 hospitalizations. In December, her inflammation in her cal protectin marker was greater than 2,000 (it's supposed to be no higher than 163 for her.) Her GI wanted her to go on Remicade & steroids. She was on Prednisone & weaning off from it gradually, but we had to keep her at .5 b/c of her high inflammation. She's only on prednisone, Xifaxan (SIBO) & nutrition & supplements (including b12/magnesium injections 2x weekly & metagenics UltraInflamX as well as a host of supplements.) It has been coming down by half every week 1/2 - 2 weeks. Last time we checked, it was in the 300's. We are waiting to hear back on the most recent sample. Lastly, we started her recently on LDN, but her numbers were coming down before we introduced it.

For her diet; no corn, soy, gluten, dairy, yeast. No nuts or seeds (nut butters/seed butters ok.) No maltodextrin, no titanium dioxide, no polysorbate 60 & 80, no gmo's. She eats only grassfed beef, chicken or lamb, or wildcaught fish. Starch, thite rice, potatoes or sweet potatoes. Eggs ok. Lots of smoothies with Now Foods egg white protein. Cooked/steamed veggies, lots of home made soups. We try no sugar as well, with occasional small amounts of honey or maple syrup.

If you're interested in her list of supplements, let me know & I can pass on that info. She's seeing a MD who also practices integrative medicine & another doctor who is a clinical nutritionist an assistant Professor at UCLA Medicine, so everything they recommend is solid and based on scientific information, though your typical GI will more than likely differ in approach & opinion.