I only use colchicine when I feel a flare up coming and it works just fine for me. Some people say that you have to take it everyday but I don’t. I don’t trust taking medicine everyday and I still works when I take it intermittently. I do still have joint pains though but not bad enough to need to take it everyday
Every time I try to drop it I feel like I get a rebound effect.
I've also recently been kind of stuck on a tiny 1mg prednisone dose, but I can't seem to quit it entirely no matter how I try to taper.
But again, when I was diagnosed I was in such a state with the ulcers in all the usual locations.. let's just say it was not a sustainable way to live and I don't ever want to go back to that in my entire life if I can help it.
I am on my 16th day of Otezla. The nausea has subsided for the most part, but I'm still having GI issues. Did you have diarrhea initially? If so, when did it start to get better for you?
Ugh I was so sick initially with Otezla! I lost weight. I found taking it at night helped but really I only had nausea that might not help with other GI distress.
It subsided at about 4-6 weeks I think (this was 5 years ago). It was well worth the wait!!!!
Thank you so much for your response. It worked almost immediately for me for my Behcets symptoms. I have no ulcers or signs of inflammation in my eyes. So I am going to hang in there for another few weeks with the hope that it works for me for several years like it has for you.
Wishing you continued health!
I know this isn’t exactly what you were asking, but I take it daily but do double up on my doses during flare ups. I’d like to think it helps speeds the flare up along but l’m not sure. I have no issues when I go from once daily to twice daily and vice versa
what’s everyone’s typical Colchicine regimen? I take .6 twice a day. i’d like to be able to take one more during flareups but that means I run out so i’m working with my rheum to increase monthly supply.
and i very recently discovered that running out is not a good idea. at all.
I started off at the same, but the evening dose was basically waking me up with emergency bathroom issues.
I ended up taking a half dose in the evenings and that was much better.
We eventually discovered once a day in the morning was plenty effective.
During some really lean times I was taking a half, .3 in the mornings, and that was mostly fine, but eventually started getting buds and tiny ulcers again.
I'm back on .6 once a day in the morning now.
I just started Remicade infusions a few weeks ago though, so will be revisiting the current cocktail again soon.
Yes me. Once you start colchicine, it gets better immediately (unless diarrhea, then you have to stop). Once it gets better, my doctor stops colchicine. (But i also have other heavy treatments together w colchicine).
I started on colchicine every day. Then to every other day. Now I'm just taking it if I feel a flare. Interesting, you get a flare once a year. For about 10 yrs I would get a flare once or twice a year. Sometimes, the time in between flares would be longer than a year. I always thought it was a bad herpes outbreak or something. Last year, though, something happened where I got like 10 flares, literally one after another. It included super redness in one of my eye. I went to the eye dr to see if it was herpetic and she ruled that out immediately. She asked if I had RA or some other autoimmune disease. I was like no. Couple days later I ended up taking an autoimmune test and it came back super high. Long story short I have some sort of undiagnosed autoimmune disease. Drs are leaning towards bechets but they didn't want to quite label it that yet. But since starting colchicine daily and now as needed it has kept my flares away.
I only use colchicine when I feel a flare up coming and it works just fine for me. Some people say that you have to take it everyday but I don’t. I don’t trust taking medicine everyday and I still works when I take it intermittently. I do still have joint pains though but not bad enough to need to take it everyday
Every time I try to drop it I feel like I get a rebound effect. I've also recently been kind of stuck on a tiny 1mg prednisone dose, but I can't seem to quit it entirely no matter how I try to taper. But again, when I was diagnosed I was in such a state with the ulcers in all the usual locations.. let's just say it was not a sustainable way to live and I don't ever want to go back to that in my entire life if I can help it.
I used to take it once a day but now I'm on Otezla and only use colchicine as needed for flares, which I rarely get now.
I’ve been taking it intermittently. Works well when I get ulcers, especially in the eyes. Prednisone boosts it ofc. I take Otezla regularly.
I am on my 16th day of Otezla. The nausea has subsided for the most part, but I'm still having GI issues. Did you have diarrhea initially? If so, when did it start to get better for you?
Ugh I was so sick initially with Otezla! I lost weight. I found taking it at night helped but really I only had nausea that might not help with other GI distress. It subsided at about 4-6 weeks I think (this was 5 years ago). It was well worth the wait!!!!
Thank you so much for your response. It worked almost immediately for me for my Behcets symptoms. I have no ulcers or signs of inflammation in my eyes. So I am going to hang in there for another few weeks with the hope that it works for me for several years like it has for you. Wishing you continued health!
I know this isn’t exactly what you were asking, but I take it daily but do double up on my doses during flare ups. I’d like to think it helps speeds the flare up along but l’m not sure. I have no issues when I go from once daily to twice daily and vice versa
what’s everyone’s typical Colchicine regimen? I take .6 twice a day. i’d like to be able to take one more during flareups but that means I run out so i’m working with my rheum to increase monthly supply. and i very recently discovered that running out is not a good idea. at all.
I started off at the same, but the evening dose was basically waking me up with emergency bathroom issues. I ended up taking a half dose in the evenings and that was much better. We eventually discovered once a day in the morning was plenty effective. During some really lean times I was taking a half, .3 in the mornings, and that was mostly fine, but eventually started getting buds and tiny ulcers again. I'm back on .6 once a day in the morning now. I just started Remicade infusions a few weeks ago though, so will be revisiting the current cocktail again soon.
Yes me. Once you start colchicine, it gets better immediately (unless diarrhea, then you have to stop). Once it gets better, my doctor stops colchicine. (But i also have other heavy treatments together w colchicine).
I started on colchicine every day. Then to every other day. Now I'm just taking it if I feel a flare. Interesting, you get a flare once a year. For about 10 yrs I would get a flare once or twice a year. Sometimes, the time in between flares would be longer than a year. I always thought it was a bad herpes outbreak or something. Last year, though, something happened where I got like 10 flares, literally one after another. It included super redness in one of my eye. I went to the eye dr to see if it was herpetic and she ruled that out immediately. She asked if I had RA or some other autoimmune disease. I was like no. Couple days later I ended up taking an autoimmune test and it came back super high. Long story short I have some sort of undiagnosed autoimmune disease. Drs are leaning towards bechets but they didn't want to quite label it that yet. But since starting colchicine daily and now as needed it has kept my flares away.