I quit humira, started LDN, and feel great

I haven't posted here in months, but I wanted to let everyone know how I was doing. Humira helped me the first month I was on it, and less the second month, and by my third month my GI wanted to increase my dose. My GI was willing to try Low Dose Naltrexone, because the head of gastroenterology and the IBD unit at UCSF medical center (the best med school in california and a huge hospital) was starting to prescribe LDN for his patients.

So, my first week on LDN was a little worse. Second week was much better, basically full remission of all symptoms, as strange and quick as that was. The 3rd thru 5th week were touch and go, not feeling 100%, but since week 7 I have been doing great again. My doctor claims I am in remission, and I only go BM 1-2 times a day, usually solid. This is a drastic change from before. I also am having less issues with pain and my blood work (white count, red count, c-reactive and sed rate) are all normal now.

Obviously, Humira is a life-saver for some people. As is Remicade. But there are other options, and they are becoming easier to access and are obviously safer than last-resort therapies like Remicade, Humira, and soon Cizmia, Tysabri, Prochymal, and others with poorly established or ominous safety profiles.

Maybe this thread can become (yet another) discussion on LDN, but that isn't my intention. My intention is to let you know that LDN worked better for me than Remicade, and I'm feeling great! (hence no longer spending an hour a day on healingwell.com). I believe the Phase 2 for LDN will be published by the end of the year, but I have no clue other than that our lovely US Govt (NIH) decided that the phase 1 data was so impressive, they funded a phase 2.

I envision a day when people with Crohn's demand better treatments, organize resources to do basic research to understand cause, and set and fulfill yearly goals towards a cure. Currently the CCFA is doing very little of this with only 15 to 20% of their annual $60 million revenue going to research.

Hi Frazier, I haven't seen you here for a while, and I have been looking for you.
I read you are well, and I am so excited that also you have started using Low dose naltrexone, LDN. I have only been on it for may be 9 days. I tapered off of my first medication ever for Crohns, I got my dx this summer. I had pred for almost 3 months and followed the GI advices all the way. But I have decided that when the prednisone had done it's work (and maybe damage as well) I would go for LDN.

I have already got nice changes due to my intestine's problems. When I had 14 days left on the prednisone I started to get my problems back, little by little. I had an obstruction, I got the D and the pain. And of course the bloating and the pregnant look. So when I had finished prednisone I was really eager to start.

9 days aren't that much, of course I understand that this could be a placebo reaction, so I have to wait and see ...maybe untill I have increased the dose to 4.5, I am still on 3 mg. My changes untill now are reduced BM from 3 -4 times a day to only once a day. The BM was D or mixed. So that wasn't the biggest problem. But it's ok that this is normal now. Reduced pain. I haven't got the after dinner pain anymore. No bloating. I still, and of course get -now only a little pain- if I have eaten some fiber rich food as brocolli and bananas, cause I've got a narrowing with a possible stricture.

I know that there are some more ppl in here that have started or wants to use LDN. Could be nice having a thread in here, it could actually make some more interested in this medication.

I have also learned that we need to change our diet to help ourself and by that take more responsibility to change our health. So I use probiotics, I have reduced my milk intake, I make home made scd yoghurt and I have started to bake my breads without yeast. I also avoid white sugar. I also use cod liver oil, multivitamines and B-total, in addition to 1000 mg C-vitamine per day. I have been thinking that if I do that may be LDN will do the rest.

I am going to take tests later, it's better to wait some months before I do so. Did you start on full dose at once or have you used less, and then increased? How long did it take before you increased the dose?


With all the best from Ingrid

Good for you wishing you all the BEST!!!!!!!!!!!
sm

Glad you are doing well on the LDN. Please keep us posted. I'm off Remicaid, doing Humira & Imuran & tapering predinose. It's nice to know there is a "maybe" drug left. I've been following the LDN studies too.

As for the CCFA, don't hold your breath. They are heavily funded by the major drug manufacturers.

So glad you are feeling better!! Nice to hear from you.

Thank you everyone for your kind words. I will keep you all posted and let you know if the remission is long lasting.

Good luck to everyone who is willing and healthy enough to try LDN. I must say, it is not for everyone, because you must not be in mcuh pain, because you can't be on opiates, and not all of us are that lucky...

Oh, and Skjura, I have been on LDN for over 8 weeks now, not 9 days, although I did oddly feel better my 2nd week over my 1st, 3rd, and 4th. random chance, perhaps?

Also, one last thing, I NEVER recommend quitting humira or remicade without having a plan with your doctor. It is much like quitting prednisone (symptom relapse wise), without all the hypo-adrenal side effects. Your disease may relapse just as bad or worse than before you started Humira/Remicade. It is something I have observed in myself and through friends....I am sure those that know when they need their next shot/infusion because of symptoms can relate to this...thats what makes the jump to LDN a little tricky for some people.

I am also still on anti-MAP antibiotics, 4 months now, not Dr. Borody's cocktail but similar, but I have a feeling that it was the LDN that put me in remission. I will have a colonoscopy in a few more months to see if I have any endoscopic healing. Recently MAP was visualized in human macrophage cells by oil immersion microscopy. This means that the whole direction of Crohn's research may turn from immune suppressing to immune boosting, but it is too early to say for sure.

Post Edited (fc1001) : 10/2/2007 1:24:18 AM (GMT-6)