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Humira not working - What next?

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Crohn's Disease
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Posted 4/14/2012 10:41 PM (GMT 0)
Surgery or Remicade? My doctor has said I can try Remicade but he said the response rate for those who didn't respond to Humira is <30%. The last thing I want is surgery but my last small bowel follow through showed that the affected area of small intestine more than doubled in 18 months despite all of the drugs I've tried. Started with Metranidazole and Pentasa, then Entocort for quite a while, then Imuran, now Humira. Even went through a drug trial with no success. I've been hearing and reading that now a days, doctors prefer to do resection surgery as an elective (when the patient is relatively healthy) as opposed to waiting for an emergency situation to occur. When done on elective basis, they have the option of doing it laparoscopically (sp?) with less potential for complications, faster recovery, etc.

The last thing I want is surgery -- to be honest, when I was diagnosed a few years ago, I never thought I would be facing that as an option -- boy was I in denial. .... but if there is such a low response rate on Remicade for those who haven't responded to Humira, then is it worth even trying? Even if the Remicade works, it sounds like that won't last forever and I'll wind up in the OR anyway. Also, my labs seem to be going down hill the longer I'm on these heavy duty meds. My WBC is really low and my liver enzymes aren't very happy. Apparently, they're not bad enough to warrant stopping the meds yet, but they are concerning my doc (and me) a bit.

Just looking for some opinions from those who have been through it. I'm having a real hard time here. Thanks.

Katie
Posted 4/15/2012 2:22 AM (GMT 0)
why not Tysabri? I know the side effects sound scary but it gave me three wonderful years free of prednisone, MTX and all the crap i'm taking now.
Posted 4/15/2012 12:10 PM (GMT 0)
Why not try LDN, low dose naltrexone?

People usually use this as a last resort and many find it gives them remission.

IMO, this should be the drug of first choice instead of last resort.

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

 

 

What do you think?

Posted 4/15/2012 4:30 PM (GMT 0)
Do you know if your affected area is scar tissue or inflammation? If it's inflammation, there is always the chance that drugs could help resolve the inflammation so that your tissues are healthy again. If it's scar tissue, the only way that would get better is through surgery.

Have you tried Cimzia or another one of the biologics?

It is really up to you what you decide to do. It's not an easy choice. I wouldn't discount surgery completely yet. I had a resection about a year ago after an awful flare. I decided to try Remicade, but I wanted to hold off on the other biologics in case I got sick again. I did Cipro and Flagyl. After an abscess and a fistula, I got fed up and went through with surgery. It wasn't easy. Since I was so sick, I had to have an open procedure to remove my fistula. Recovery took a bit longer for a healthier person. Though as an elective procedure it was much, much easier then if it had been an emergency. I still think it was the best decision that I've made with my disease so far and I feel better now then I have in years. Granted, I am still getting used to post-surgical effects like some urgency, lots of D and an adhesion where my fistula was.

That being said. Surgery is something that you need to be mentally prepared for. It's a state of mind that you need to be in prior to having it done, since it is a choice. I remember when I my fistula popped up and my doctor suggested surgery or more Remicade. I'd had enough. I was fed up. I just said no more, take it out because I felt like I had nothing to lose except the fistula.

If you still think there's more you can do or you need more time, then postpone the surgery. Don't jump for that one unless you're absolutely ready for it.
Posted 4/15/2012 8:23 PM (GMT 0)
I'll second InSoFla- try LDN. I was prednisone dependent, failed remicade after a couple months, then switched to Humira, got relief only with double dose of Humira, but failed that after 2 years- then after starting LDN and stopping Humira I finally got pred free remission for almost a year. Having a little trouble again now so it too is not my magic bullet, but it seems t have helped me avoid surgery after failing Humira.. and frankly I was fed up with the bioligics- I was having colds and sore throats drag endlessly, getting occasional mild joint pain even before failing them, and really feeling like hell, with my face getting pale and puffy at the end when I quit Humira of my own accord (planned on surgery but then things got better as I started LDN).
Posted 4/15/2012 8:43 PM (GMT 0)
Sorry. I just now got a chance to come on and see the replies. 2 young children and a husband recovering from minor surgery have limited my internet time for the past day or two. THANK YOU all so much for the input. It is much appreciated and has given me a lot to think about. I had never heard of LDN and am now in the process of researching it and plan to ask my doc about it when I talk to him tomorrow. I've been so down in the dumps and am terrified of surgery. Not so much the surgery itself but I have this crazy fear of GA. ... and I mean CRAZY fear. I do it when I need to (back surgery, gall bladder surgery, etc) but I'm always terrified. I will certainly have surgery if we decide it's for the best and at this point I'm not sure it's not. I'm pretty sure I was told that the affected area of my intestine is inflammation but I will need to double check on that. I would think if it were scar tissue, my doctor would have recommended just taking it out by now. He's not one to consider surgery lightly. Up until my last appointment, he hadn't ever even uttered the "S word" to me. ;)

Thank you all again. :)
Posted 4/16/2012 12:27 AM (GMT 0)
Kate,

Here are the links and website for your research on LDN:

For those of you considering LDN, or for those of you not familiar with LDN, I wanted to share my story:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10 (on scale of 1-10, 10 being the worst).

When I spoke with the compounding pharmacist, she mentioned that I may not be absorbing the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

The THIRD day after I started the transdermal LDN, my bleeding went from a 10 to a 3. FOUR days after that ( full week on LDN), my bleeding STOPPED completely, after more than 1 1/2 years of continuous bleeding. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com

Hope this helps. And I hope to those of you on the fence about trying LDN, give yourselves a chance...

Please let me know how it works out for you.

Posted 4/16/2012 1:51 PM (GMT 0)
Thank you very much, InSoFla. That is very helpful. :)
Posted 4/16/2012 1:53 PM (GMT 0)
Kate,
My pleasure.
Let me know what happens. :-)
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