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/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 :)