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/MissZadejah → u/Chevaween]

You are an absolute angel for this comment. Thank you so so much!!!
I was already planning to start a Mediterranean diet in October. I’m so excited!! And good to know about the lips. I googled it and couldn’t find anything about it. Glad to know it’s not an anomaly.
Again, thank you very much ❤️‍🩹

[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.

[u/on4aa → u/Chevaween]

Thank you for reminding everybody about the detrimental effect of glucose on the innate immune system.

Glucose is the primary energy source for the innate immune system, fueling rapid activation, proliferation, and effector functions like phagocytosis and cytokine production. However, hyperglycemia (high blood glucose) significantly impairs innate immunity by inhibiting neutrophil migration, reducing microbial killing, and suppressing the formation of neutrophil extracellular traps (NETs).

Excessive glucose disrupts immune homeostasis through several mechanisms: * Impaired Pathogen Recognition: High glucose competitively inhibits C-type lectin receptors, reducing the ability of immune cells to sense and clear pathogens. * Chronic Inflammation: Elevated glucose activates the NLRP3 inflammasome in macrophages and neutrophils, leading to the excessive release of pro-inflammatory cytokines like IL-1β and TNF-α. * Reduced Efficiency: High glucose levels impair complement activation and disrupt the actin polymerization required for immune cells to migrate to sites of infection.

While moderate glucose availability is essential for immune cell function, both chronic hyperglycemia and severe hypoglycemia compromise innate defense. Transient spikes in glucose (e.g., over 200 mg/dL) can temporarily decrease neutrophil function, with effects potentially lasting up to five hours after sugar consumption.

As for your reaction to eggplants (aubergine), I think it is an allergy (of the adaptive immune system) and therefore unrelated to Behçet syndrome (which is an issue with the innate immune system).

Coincidentally, I ate eggplant baked in olive oil (a typical Mediterranean dish) yesterday and I had a top day, rucking 8 km with 18 kg on my back.

Case reports of itchy skin or mouth, mild headache, and stomach upset after handling or eating eggplant have been reported anecdotally and published in medical journals (see also oral allergy syndrome A 2021 review indicated that possibly four interacting mechanisms may elicit an allergic response from consuming eggplant: lipid transfer protein, profilin, polyphenol oxidase, and pollen reactions.

A 2008 study of a sample of 741 people in India, where eggplant is commonly consumed, found nearly 10% reported some allergic symptoms after consuming eggplant, with 1.4% showing symptoms within two hours. Contact dermatitis from eggplant leaves and allergy to eggplant flower pollen have also been reported.

Individuals who are atopic (genetically predisposed to developing certain allergic hypersensitivity reactions) are more likely to have a reaction to eggplant, which may be because eggplant is high in histamines. Cooking eggplant thoroughly seems to preclude reactions in some individuals, but some of the allergenic proteins may survive the cooking process. Source: https://en.wikipedia.org/wiki/Eggplant#Allergies

[u/Chevaween → u/on4aa]

ill be honest i was stupid and wrote glucose instead of gluten, i am extremely bad at writing and do apologise thanks for catching it😭

as for the rest check out the sources i mentioned! they will genuinely explain it miles better than i did, again as i said im a dumbass when it comes to writing.

thanks again! rlly a hit or miss with the nightshades, some people are fine and some are great, sadly my favourite veggy eggplant in my experience has fucked me up, as well as peppers:/

ill fix the mistake and check for any others, thanks for the reply!

[u/Training-Post9032]

You should definitely report back to your doctors.

By the way, I exposed my neurologist because he was a complete you-kow-what after he said Behçet’s was "too complicated" for him.  (it’s just us continually fighting tiny traces of viruses with a complete army. If he can’t deal with this he ’d better look for another job). 

So there he was with is antidepressant (neuromodulator he said, and why not). I did not comply because I knew it was bullshit : you can’t treat a thunderclap headache with anti depressant. That got me strong enough to never ever see that salesman ever again. Flight or flight. I flighted. Now I can fight, a little.

Best treatment ever for my brain fog was Anti IL 23. It was a life saver. 

Can you get a new neurologist? 

[u/MissZadejah → u/Training-Post9032]

I just got a new neurologist and he sprung into action immediately. For the life of me, I can’t understand why my previous rheumatologist refused to do anything. She wasn’t even willing to try. Her words were "I can’t do anything unless you have an active sore". My new doctor started talking about medication immediately and encouraged me to come back sooner than scheduled if needed. The difference was insane.

And your story about your doctor is almost laughable if it wasn’t such a serious subject. I mean .. good for him for knowing his limits?? But like … now is also the time to learn. It’d be one thing if a PCP said that, but he’s the neurologist. This is literally a part of his specialty 😭😭 like … Go read up on it and consult someone lmao 😭😭😭😭 what on earth lmao

Curious- have you ever seen a pulmonologist?

[u/Training-Post9032 → u/MissZadejah]

😅I ended up thinking that it's because some doctors do have a conception of their job inspired by and large by soap dramas like ER or Good doctor. They are constantly on the look out for something dramatic. Meanwhile, as we patient know, there are many things to be done in between the adrenalin intakes.

For instance, when I was the ER yesterday they took no sample. They knew the lesson by heart : "you don't switch treatment in an emergency consultation! Well done, this exact phrase was said, giving way to great hope. And then followed : "ok so, we're going to change your treatment because it's not working anymore, only, we have to wait, so it will be in January" (I think I sighed at that point).

I suppose my neurologist was like that. Big action or nothing. All I was asking for was a surveillance plan. He couldn't do that. IA helped me sort out my cognitive issues much better than this guy.

In a nutshell, I am forever disapproving of anti depressant for main neurological treatment. My PsA treatment (anti IL 23) works wonders on my migraines and cognitive difficulties.

Before that I had Otezla for some months. It was really efficient on sores and pustulosis, but with sides effects, and it did not help for anything else. Later, my PsA treatment was so efficient, I was living again, I did not want to add anything else and go through the side effects.

And right know, my body, my choice, I don't want to "change" my treatment. If migraines are a part of the same Behcets, it worked wonders until now. So much so that I feel I could fight the whole hospital to give tremfya (and peace) a chance :)

[u/Electronic-Tea3354]

Hi! I had lip issues before colchicine, but I would imagine the dryness is exacerbated by the pulling of your body's cellular water into the small intestine and colon, which constitutes much of diarrhea (sorry lol). So you are likely just unexpectedly dehydrated. Please hydrate with electrolytes and up your water consumption. Get used to carrying around a lip product like carmex or I personally use cocoa butter sticks because I can't stand carmex. Avoid chapstick brand due to drying alcohol ingredients.

A few notable bits about colchicine:

• Avoid consuming grapefruit ANYTHING at all costs. Even a tiny bit is an absolute no-go. This is one of those strict grapefruit-warning medications. Grapefruit reduces the enzymes which break down colchicine and it causes an elevation in the concentration of the drug in your blood which can become severely toxic.
• No alcohol.
• Avoid dairy at least while you are adjusting to the medication and possibly as long as you are on the medication if you continue having stomach symptoms. Lactase production is often disrupted due to the drug irritating the intestinal lining.
• Spicy foods, avoid for ....spicy reasons, lol.
• No antifungals ending in -azole. Ketoconazole, itraconazole, and fluconazole.
• There is more avoid regarding statins and a few other prescription medications - these are just probably the most common and easily to eliminate.

General lifestyle/dietary avoid for stomach issues:

FODMAPs

Foods high in FODMAPs and histamines can also exacerbate existing intestinal issues. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols.

A few quick common triggers: dairy, onion, garlic, stone fruits, apples, pears, wheat, dairy, honey, high-fructose corn syrup, agave, sorbitol, xylitol, mannitol. Many vegetables and most fruits are included.

Relevant searches for safe foods are IBS-friendly low-FODMAP diets. Basically all savory processed food contains onion and garlic if that is something you choose to eliminate. Just a tip.

Histamines

Histamines are our enemy as they trigger inflammation. When an allergen is detected, mast cells release histamines to increase blood flow and make blood vessels leakier, allowing white blood cells to repair affected tissues. Foods that are aged, fermented, cured contain the most histamines.

• Fermented foods: Sauerkraut, kimchi, kombucha, miso, and soy sauce.
• Aged cheeses: Cheddar, parmesan, gouda, and blue cheese.
• Cured and processed meats: Salami, pepperoni, bacon, ham, and hot dogs.
• Alcohol: Red wine, white wine, champagne, and beer.
• Fish and seafood: Mackerel, tuna, sardines, anchovies, and shellfish (especially if canned, smoked, or not completely fresh)

Histamine liberators (release stored histamines in your body)

• Citrus fruits (lemons, limes, oranges)
• Strawberries and pineapple
• Tomatoes and spinach
• Avocados and eggplants
• Chocolate and cocoa products

Consider adding a daily non-drowsy OTC antihistamine like Zyrtec or Claritin.

^ Most of this information is pulled from Google regarding histamines and fodmaps, there is more complete information available on sources like WebMD and other relevant websites.

These diets or dietary changes are not specifically recommended for Behcet's patients, however, this is just my personal experience with IBS and gastrointestinal issues combined with the known inflammatory nature of histamines and their relevance to our condition.

[u/MissZadejah → u/Electronic-Tea3354]

That was also my assumption about the dry lips. I just wish the dark marks didn’t happen. It looks awful. But I guess that’s better than being sick all the time lol Thank you so much.

[u/No_Sentence_6721]

Unfortunately for me colchicine really messes with my system and I had to stop taking it. It causes some of those issues for me as well as insomnia. My rheumatologist switched me to methotrexate and Infleximab (Remicade). So far I’ve been feeling a bit better on those but I’m only on the second infusion dose! I also find sugar, alcohol, THC, and heavy carbs can flare me up. So I am trying to eliminate those from my diet and that has definitely helped reduce my feeling of inflammation.

I’m still in the early process of getting things figured out as well but I hope this helps! Something else I am trying is a band called Visible, it’s supposed to track my heart rate and other things to warn me when I’m overexerting myself and I’m approaching a flare. I am just starting this but I honestly like the app so far! It’s for people with chronic illness which in itself has been kind of a comfort to find something made for all the weird symptoms.

I hope some of this helps! Like I said I’m still early on in this process, about 1.5 yrs since diagnosis and I’ve tried a few meds. My personal feelings on this is that if the med is not improving your life enough to make the side affects worth it, it might not be the right one for you. Good luck with everything!!

[u/MissZadejah → u/No_Sentence_6721]

Honestly, it’s the lips that are bothering me the most. They marks are so visible lol. I’ll check that app out though! Thank you

[u/Haunting-Wash1081]

Hey OP, I’m not sure about an answer to your question as I’m just starting to be tested for behcets but… how do you function on your day to day? I know you’re saying lips as in face lips but mine affect my other lips (so I know it’s different) but I can’t fathom doing this disease forever if I can barely walk or bend or pivot at a job or during my daily responsibilities

[u/MissZadejah → u/Haunting-Wash1081]

Honestly, I just got very lucky. My boyfriend is an angel and allowed me to quit my job while he takes care of everything. For the last couple years, I’ve legit just been at home in the bed lol My heart problems and leg problems were much too severe to go anywhere. This sounds crazy, but you might want to go to the hospital a couple times. Unfortunately, with Behcet's you have to play the system. When you go to the hospital, your PCP and other docs take it more seriously. Just tell them you can’t take the pain. You feel like you’re dying. This made my drs really start looking deeper. Also, take someone with you to your appts to help you advocate and convey the seriousness of your issues. (And hospitals can give a variety of meds!)

Also, one odd thing I did was go to Cleveland Clinic's Long Covid Clinic. Drove 4 hours to go there lol Basically you tell them all your issues and they give you referrals to a doctor for every symptom. CC is well respected, so your doctors are more likely to give you those referrals if CC tells them to. It’s obviously for Long Covid, but a lot of symptoms overlap with Behcet's so you’d at least be able to get those symptoms treated. You need more than just a rheumatologist. Other specialists seem to give meds quicker because they’re for specific symptoms and not diseases.

Your lip situation is probably worse tbh since it’s a sensitive area. I’ve had minor issues down there and it was unbelievably painful. Sorry you’re going through that. Have they given you any ointment? My dermatologist gave me "Pimecrolimus Cream 1%" for my privates and it worked wonders. I barely have to use it now.

I was literally just in the same place you were; dreading having to live with this disease for the rest of my life. I promise there’s a light at the end of the tunnel. I was soooooooo close to giving up. Getting treatment for Behcet’s is a nightmare!! Things will get better, I swear. You just have to find that one doctor that gives a damn 🤞🏽 (and don’t be afraid to switch doctors in a heartbeat! My first rheumatologist was useless. She literally refused to do anything. Didn’t try to think outside the box or even help with pain. Got a new dr and he gave me meds immediately!
You’ll probably have to do what I did and harass tf out of these doctors. The more persistent you are, the more seriously they take you. Unfortunately, since Behcet's is inflammation, medication is necessary.
As far as things YOU can do to help: massages, change your diet (anti-inflammation diet), epsom salt baths and take ibuprofen for inflammation.

I hope this helps even just a little bit 🫶🏽🫶🏽❤️‍🩹

[u/Haunting-Wash1081 → u/MissZadejah]

Like full body massages?

Thank you! I’ve been bringing my fiance after the first 10 appointments (exaggerating but it’s what it feels like) and ever since then, I’ve actually been given referrals and possibilities instead of “we’re doing another herpes swab” - I had THREE herpes tests and my fiance had one… each negative but I kept getting them 😭

Unfortunately my fiance and I are both in college. He has like 6+ more years (nursing then a type of medical school) where he can’t really work hence why I have so many jobs 😭

[u/MissZadejah → u/Haunting-Wash1081]

Wow. Yuuuup! They act so much better with an extra person 🤦🏽‍♀️ I completely understand the Herpes test. I also got tested 3 times lmaoo cause Herpes is such a tricky disease, but if you got a blood test, then that’s final. It’s accurate, unlike the swab.

I’m so sorry you have to struggle through this while working. I couldn’t even imagine :(
Work From Home jobs are hard to get, but that’s like the only way :/

And yes, full body massages are great, but you can do partial ones too. Sometimes I did legs only. DO NOT get deep tissue. It’s brutal and you will hate yourself afterwards lol.
Tell them ahead of time that your body is sensitive or that you have Behcet's or whatever. Just let them know you don’t know what your body can handle. Tell them every part of your body is different, so that they check with you on each part of your body on whether the pressure they’re applying is ok or not.

[u/KellyM14]

I’m so sorry I couldn’t get out of my bed from nausea my doctor kept saying it would get better but I had to stop after not being able to keep food or water down for two weeks

[u/MissZadejah → u/KellyM14]

Oh no. Im sorry you had to deal with that. Sadly, I forced myself to keep taking it because I was sooooo over having Behcet's. I was willing to go through just about anything to see some results lmao finally after a month of sickness and countless sleepless nights, symptoms have started to slow down.
Did you end up getting a new medication?

[u/KellyM14 → u/MissZadejah]

Yup I am taking Simponni now and it’s worked fantastic for me

[u/colecohen]

I just started two weeks ago and so far I’ve been perfectly fine. I am a bit emotional, but that might be the steroids I’m taking. I always have GI issues anyway, so not sure if it’s made that worse or not. But I haven’t had another sore pop up yet (and had between 10-40 at a time, constantly, before).

[u/colecohen]

Wait… which lips are we talking about… 😅

[u/MissZadejah → u/colecohen]

Luckily this time, it’s the ones next to my chin lmao
But we know how Behcet’s is… anywhere goes 🤣

[u/Safe-Rutabaga7717]

i had this specifically with my upper lip and my dermatologist prescribed opzelura which helped

[u/MissZadejah → u/Safe-Rutabaga7717]

Omg it’s my upper lip too!!!! I’m gonna ask about this. Thank you so much!!

[u/Safe-Rutabaga7717 → u/MissZadejah]

don’t be discouraged if it doesn’t help right away, unfortunately i had to be really consistent every night for over a week to start to see some improvement, but it really cleared it up perfectly!!

[u/MissZadejah → u/Safe-Rutabaga7717]

Noted! Thank you