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

Poopydoop and straydog,

My GI has indicated that there is a subset of patients that do have flares or "mini flares" after colonoscopy. I can tell you that I have had flares after scopes that the ER, my GI, my Colorectal Surgeon, Infectious Disease Doctor and others attributed to the scope, the prep, the course and severity of my disease, and colon damage.

I am not saying it happens every time but unfortunately it does happen for me... So we now have a game plan for if it happens... But perhaps that's because my disease is severe and we struggle to keep it in control.

I did Google it and there are studies in both opinions... So I can only go by my own experiences and what my panel of doctors have told me... So I hesitate to dismiss what the poster stated. It might happen to that person also.

Perhaps this is an individual occurrence and some are more fortunate than others?

Clo

Hello, everyone! Update on my experiment:

I'm doing ok, but not great. Just saw my primary care doctor today. My bloodwork shows a lot of inflammation. High sed rate, high CRP. I've been experiencing swelling in my joints over the past year, and it has worsened this summer. I had my inflamed knee aspirated (drained) by a rheumatologist last week. The rheumatologist prescribed sulfasalazine.

I like the idea of sulfasalazine because it's not an immunosuppressant. I got sick FOUR times this summer alone whilst on Humira, and I do not want to go back on biologics because of the increased risk of sickness.

My primary care doctor insisted that I get back on some kind of med. Although I wish I could continue my experiment to try and reach remission 100% without medications, it's obvious that my UC is not well-controlled right now. That said, I'm proud of my colon for holding up so well after 2.5 month off all meds. I'm at 2-3 BM's a day with occasional mild cramping and some blood in the stool. But no urgency, no severe pain. I can still trust a fart! I'm not in remission, but I'm as functional as I've ever been with this disease.

I do not want to get back on Humira, but I have started up the sulfasalazine. That's my compromise for now.

I will continue with my alternative therapies: weekly acupuncture (community acupuncture, so it's affordable); nutritional therapy; and gentle exercise.

It's not a surprise...and now that you know you're flaring, you should set up a colonoscopy. Know what you're dealing with extent-wise. The least meds but with full coverage would be mesalamine oral and rectal (enemas). You're already on the oral...add the enemas.

q

I took think you need to get a scope. See where you are at and if you need to make adjustments.

Sometimes you have to zag when you were planning on a zig..

Clo

Good for you for trying to get off the biologics?????

Humira clearly wasn't working for the OP so then there was indeed little point in staying on it and they should look for an alternative.

However that does not mean that all biologics are something everyone should strive to stop taking. For many people where the drugs are keeping them in remission, that would be plain dangerous. Most of us would like to control our disease with diet supplements and lifestyle. In fact most of us have tried that and several of us have nearly died from trying that. Therefore we have no choice except drugs or surgery. Im happy for those people who aren't forced to choose between those 2 options but most of us do not have a choice

UPDATE:

So this is not the update I want to make, but my experiment failed. Although my symptoms while off the humira were fairly mild, my blood work was not great. My inflammatory markers were high and my iron, ferritin, and hemoglobin were low. Plus, I developed plantar fasciitis (very painful) and my inflammatory arthritis was becoming more and more frequent while off the Humira.

I had an allergic reaction to the sulfasalazine 5 days into the medication.

I realized that I can't be unmedicated right now, so, I am back on the Humira. I restarted this weekend. Amazingly, the plantar fasciitis completely went away two days after I injected the Humira.

I do hope to be off biologics one day, but my body just can't do it right now.

I'm sorry it didn't work....

I hope you didn't develop antibody to the humira. I would watch carefully for any reactions...

Also, I still think you need a scope to check the health of your intestines.

Clo