I weaned off Humira and I'm doing ok! My pharma-free almost-remission protocol.

This isn't exactly a natural-friendly forum but for anyone interested in drug-free remission, read on.

I've been trying to wean off Humira for the past year. I noticed that my inflammatory arthritis always got much worse around Humira injection time, and improved towards the end of the two week period between injections. The Humira managed some symptoms (mucus, fatigue, frequent loose stools) but never stopped the bleeding, and even while on Humira I still had some pretty wicked flare-ups.

I have been off of Humira for 1 month now, and I'm doing ok! Normal, solid stools (with blood streaks sometimes). Transit time from eating to bowel movement is 8-12 hours. I have good energy, good mood, and my inflammatory arthritis is healing beautifully. My right shoulder is almost fully back to healthy range of motion, and my right knee is 90% healed and improving every day.

Here's what I've been doing, listed in order of effectiveness:

LDN, 9mg each morning. This one is *criticial* for my mood and energy. I've been taking it since March and it has profoundly corrected my mood disorder and binge-eating disorder. Thanks, LDN!

Homemade kefir from trusted raw goat milk, 48hr ferment. This one is *critical* for keeping my stools solid. I paused the kefir for a week and my stools turned into mush and my transit time decreased from 8-12 hours to 4-8 hours. This stuff is magic, and I guess I'll be drinking it until the day I die. I prefer raw over pasteurized because it tastes more alive and keeps longer. I make a smoothie out of it in the morning. Sometimes I don't feel like eating and just have a kefir smoothie as my meal replacement.

CBD oil. Legitimately lowered my fecal calprotectin from 750 to the lowest the test will go (less than 50) over 5 months of use. I take it in the evenings a couple hours before bed.

Thorne Vitamin D/K. Taking this for obvious reasons.

90% Homemade Diet. Almost everything I eat is food I've cooked myself. I don't follow any particular diet, but avoid the major autoimmune triggers. Occasionally I'll eat something from a restaurant if I'm really craving it, but this is rare.

Acupuncture. Amazing for my stress, and really great for my psyche to work with a healer who actually listens to me and believes my body can heal. Placebo effect is very real.

Less obvious results, but I'm sure these are all helping too:
L-glutamine, Zinc-L-Carnosine, Magensium Glycinate.


I'm not 100% in remission, but right now is the best my body has felt since I was diagnosed in 2018. This is also the first time since 2018 that I haven't been on a pharmaceutical.

My body has never been able to get anywhere close to remission without prednisone, so the fact that I'm off pharmaceuticals and not pooping my brains out is a marvel in and of itself.

Good for you...

But have questions... Remicade stays in your system for 6 months to a year or so after you stop taking it depending on your dosage, total time taking the medication, and your fat content.

Could it work that way for humira too?

I don't mean to rain on your parade but please be careful....and please keep us updated.

Clo

Ah....

I hope this works for you....

Clo

I really do hope this works for you. Really and truly. I just want a "win" for one person.... I hope its you. But if it's not please let others know what happened and when so they can prepare.... And if it does work...well it gives some a little hope of breathing room if they have to or choose to go of their meds.

Are you concerned about antibodies or not being able to back on humira or the humira not working if you do have to go back on it,? That's why I don't go off Remicade and methotrexate unless I absolutely have to....although I would love to be able to get off these medications.

I am crossing my fingers for you.

Clo

Ah...didnt know that about humira. I'm glad you have a game plan.

Your post did make me Lol....

Loved your pun....so very apt.

🤞

Clo

Yep my sister also got antibodies to Humira, and rustybarr who used to post regularly here, he acquired them after stopping humira for a few months then re-starting it.

It sounds like humira never worked that great for you anyway so if you do end up needing pharmaceuticals in the future it might be wise to try something different.

Hope you continue to feel good for a long time!

I hope this works for you! I weened off Humira with my GI's permissions. It was a combo of wanting to get off the med and experiencing side effects that were negatively impacting my life. I was med free for about 1.5 years and managing with a paleo diet and supplements.
I am now on Entyvio and doing just fine.
I hope this works for you! It does take a while (months) for the Humira to get out of your system.

Glad you are still doing well!

FWIW... The SCD book has a recipe for yogurt in it. I have seldom missed a day since discovering it. I can tell when I do.... So I totally get what you are saying about the kefir.

Thanks for the update...

Clo

@Clo -- the kefir has been critical for me to have solid stool. It helps SO much! Also I'm basically addicted it at this point (which is not uncommon, LOL)

@Bacon Girl -- curiously, my gastroenterologist has never wanted to give me a full scope or another sigmoidoscopy unless I'm hospitalized, and he's a super conservative doctor. It's the one thing I agree with him on. I am very hesitant to ever get another scope out of fear of worsening the state of my colon. Instead, I rely on my symptoms and regular fecal calprotectin tests to see how my colon is doing.

If I should get worse (which so far hasn't happened!), I will try strict SCD, and if that fails, I'll restart the Humira, and if that fails, I'll switch to a new med (since the Humira has never worked all that well anyway).

The herbs my TCM practitioner recommended are called "Six Gentleman Decoction", which is good for people with "spleen qi deficiency". Not everyone with UC will have spleen qi deficiency, but I sure do. This herbal formula contains licorice, a medicinal mushroom called poria, and some other herbs. According to my TCM practitioner, it's an extremely gentle formula.

Post Edited (magicbeans) : 8/25/2023 10:23:50 AM (GMT-8)

@CCinPA yes, but a flare isn't binary. It's a spectrum. And my flare is getting better every week, not worse

What help is negativity in the healing process? I think there are folks in this forum who will never heal because they don't even believe healing is possible. Which is just sad. Autoimmune disease can be healed!

Whatever the thinking...it's the reality of what's going on that's most important. Improvement is good...and should be noted. However, it's considerably concerning that you haven't had a full colonoscopy...I would blame the GI for this, for it is remiss. You really should know where you're going at this point considering the calprotectin and symptoms aren't really the best monitoring methods. 🤔

q

Magic beans,

My labs and numbers sometimes do not correlate with the severity of my disease. The only way to ensure that we know how I am doing is thru colonoscopy. My concern for you is... UC and Crohn's patients have a higher probability of cancer. Most colon cancers caught early are thru scopes.

I know that a scope can send some people into flares... But I really think all of us should have a scope at least every 2 to 3 years.

Hopefully it hasn't been that long for you. I encourage you to think about it... Be safe. You only have this one life.

Clo

@poopydoop, my long standing gi (whom I trust) says a scope will not cause a flare. I have never had a flare after one either. The first 2 years after being dx'd I was scoped every 6 months. The prep can be brutal. People will believe what they want to believe, we see it all the time here at HW.