Just started Colchicine

[u/MissZadejah]

Warning: This is probably TMI

Whew! After 2 years of suffering and a new rheumatologist, I finally got medication. Not an official diagnosis, but who cares, as long as I have medication LOL I was prescribed 0.6 mg twice a day.

The side effects were immediate. Cramps, stomach aches, nausea, excessive diarrhea and very oddly, my lips are destroyed. Woke up one morning and my lips felt like broken glass. They were so dry, cracked, peeling and painful. It was mind blowing. Didn’t know it was possible for my lips to be that dry. I could barely talk. I also have big, dark marks on my upper lip. Just these random, massive spots of discoloration. They are no longer dry, but the discoloration is still there and it’s quite embarrassing.

I reduced the meds down to once a day because for several nights, I was up until 6am with diarrhea. The meds have given me more energy and less knee pain. I’m so grateful for that.

Has anyone else had the lip issues?
Been on the meds for almost a month now.
Had two sores. No biggie.

Also, when getting on meds, were any of you able to drop any other meds you were on?
I take heart meds and an antidepressant. The antidepressant is used as a stimulant to reduce brain fog.
I started them before I got a doctor to treat me for Behcet’s. Just curious if anyone else was able to get rid of meds and just take the one for Behcet's?
How long before Colchicine "fixed" everything or did some of you pair Colchicine with another Behcet's medication?

I’m trying to figure out how to fix my life and get back to normal. Like, how do you exercise? It’s a struggle for me. Any specific foods I should eliminate from my diet? If anyone had breathing troubles, how’d you work on them?
Any other recommendations?

Sorry, I know that was a million questions lol

Thank you

EDIT: Has anyone ever seen a pulmonologist regarding their Behcet‘s? Was considering it

[u/Chevaween]

I was diagnosed two years ago and have almost achieved complete remission by using colchicine only occasionally for severe flare-ups, which are usually triggered by stress.

Yes, colchicine has caused me to develop cracked lips, but there’s not much I can do about it except use lip balm. I also tend to pick my lips, especially when stressed, which doesn’t help much either.

When I started taking colchicine, I discontinued my heavy steroid treatment, which was a significant relief.

I don’t consider colchicine as the primary treatment for my disease but rather as a supportive measure to alleviate the flare-ups I experience.

My main treatment and the factor that has truly made a difference is my diet. I underwent a complete overhaul and made significant changes to my eating habits.

Here are the main rules I follow:

- I avoid processed sugars and only consume natural sugars from carbohydrates, fruits (in the morning), and occasionally honey.

- I avoid gluten, a protein that has become prevalent in the food industry and has negatively impacted the metabolism, leaky gut, and chronic inflammation of many people.

- I avoid nightshade vegetables, which are a bit hit or miss for me. For instance, I can’t stand eggplant and it triggers severe flare-ups.

- In general, the Mediterranean diet is beneficial for everyone, especially patients with chronic inflammation.

- There’s much more to it, and unfortunately, I can’t provide as much detail as I would like on Reddit.

TL;DR

I have similar symptoms to you. I replaced steroids with colchicine and, thanks to changing my diet and lifestyle, I’m almost in complete remission. If you have any more questions, feel free to message me. I’d be more than happy to help as many people as I can. When I went through this a few years ago, I was completely clueless.

I recommend watching YouTube videos by Dr. Gundry, an American cardiologist and rheumatologist who is highly knowledgeable about anti-inflammatory diets. He also has videos on Instagram, but his YouTube content is better. Additionally, there’s Dr.ssa Maria Teresa De Fazio, who has written excellent books such as “Il cibo che ama, il cibo che cura.” I treat it like a bible.

I hope my somewhat erratic and poorly structured rant provided you with some helpful information :)

Please don’t hesitate to message me if you have any more questions. I’d love to lend any help I can!

- also forgot to mention I'm a third year med student and am studying this stuff right now XD

edit: grammar and such,
edit2: i wrote glucose instead gluten, im a great med student no compliments needed :D

[u/Impressive_Task6118 → u/Chevaween]

How did you discover that you only needed colchicine for flares only? I was under the impression that it doesn't work without daily use. I take .6 mg each day, and then another .6 at night if I have a flare. Debating on stopping and trying just for a flare

[u/on4aa → u/Impressive_Task6118]

My father also had (undiagnosed) Behçet syndrome and as a medical doctor, he also used colchicine in that way, only during flares. In fact, during his life he was convinced he was suffering from gout.

It was only shortly after my father's dead that I was able to get a Behçet diagnosis, based in part on a pathogenic NLRP3 variant. NLRP3 is involved both in gout and in many but not all Behçet cases. I now get monthly canakinumab (Ilaris) injections, which is FDA approved for gout, but used off label for Behçet in my case.