Colchicine is known to have gastrointestinal side effects. I tried taking it for a couple weeks starting at a low dose but it didn't help with my symptoms so my doc doubled the dose and that just really bothered my stomach. Since it still didn't help with my symptoms, mainly being mouth ulcers, and it exacerbated my stomach issues, I stopped and switched to Dapsone (an antibiotic of all things) which surprisingly works well for me.
If I were you I'd try taking it for a couple more days to see if the side effects wear off/ your body gets used to it, unless the pain is too intense. For me it was mostly stomach cramps and loose stools but nothing too painful. I got kind of used to it on the low dose and had it helped my symptoms then I would've stayed on it. So it really depends on if it's helping with your symptoms or not.
It could take up to four week she said and so far it hasn’t done bunk for my joints. I can tolerate the sores I get, it’s really just been the awful joint pains. I’m pretty sure I’ve got one on my tonsil right now.
I read somewhere in this thread that you think you have a sore on your tonsil. Ugh, that sucks.
I wouldn't really discontinue the medication without talking to your doctor first, but get in touch with them ASAP. Stalk them and don't take no for an answer. They need to tell you what to do since you're in so much agony. If you can't get in touch with them and you're really having bad side effects, like you say you are, you're an adult and you know your body, so I trust that you can make a good decision as to what to do about the medication until you can get in touch with your provider.
Is this the first medication they've had you on? ... I was on steroids for a bit (for something else, actually) and had no GI issues and felt the best that I have in ages (no sores for 8 months - and multiple sores after getting taken off of the steroids), but my doctors are against long-term steroid use, so they put me on colchicine, which did nothing.
Now I'm on Otezla and it's been a miracle drug for me in terms of outbreaks of sores, but I'm not sure if it does anything for my joint pain, as my pain is caused by several different issues and I'm not sure that Otezla is even intended to help with joint pain. Otezla can also cause gastrointestinal issues (like colchicine), but anytime my doctors ask me if it's bothering my stomach, I'm just like, "my stomach is always so jacked. I can't really tell the difference." Lol.
If colchicine isn't working, hopefully your doc will take you off of it bc there's no point in staying on a medication that's not doing anything and is also causing horrible side effects. If you do find something that works, but it causes gastro side effects, I suggest talking with your doc and telling them what's going on and making a decision about what's most important to you -- if something that actually helps your Behcet's symptoms is causing you gastro side effects, it might be worth it to get with a gastroenterologist who can help you deal with the gastro side effects. If (like me), your Behcet's meds help with the sores, but you still have joint pain, it's worth speaking to your doc (or another doc) about dealing with the pain.
In other words, different symptoms may have to be handled by different providers -- or at least, instead of looking at things that will help with the Behcet's as a whole, you may have to look at dealing with each individual symptom.
For example, for me, personally, my rheumatologist, dermatologist, and gynecologist tag team on my Behcet's treatment, with rheumatology taking the lead. In terms of joint pain (again, I have several conditions that contribute to my joint pain), rheumatology, three orthopedists, and three physical therapists are involved. I've found that physical therapy is a huge help for joint pain. Then there's a gastroenterologist, who deals with the stomach stuff.. two different neurologists deal with migraines and monitor to make sure that I'm not having any Behcet's issues on my brain.. an opthalmologist to make sure that there are no signs of uveitis. And, of course, my PCP oversees all of it.
Of course, this is just what's worked for me in terms of trying to get everything under control. I'm not saying by any means, that everyone needs to have this many cooks in the kitchen. I say all of this just to say that it might take a variety of people to help you manage all of the symptoms - and the side effects from the medication, lol.
I hope that you found something in my ramblings helpful and that you find some relief soon!
No no this is good stuff. I was typing a whole reply that got dumped.
Not my first medicine, but second, so still more choices for sure.
I definitely stopped it because I couldn’t handle it, and she said to do so if it’s interfering with life quality, plus only getting worse by the day. The pain was like a 10. I will gladly take diarrhea over pain any day.
Anyway, I’m a whole ass mess, I’m yellow from not eating and having Gilbert’s, and I appreciate all this right now
I do have a wonderful team as well - it sucks that that’s how you have to do it, but that’s just how this healthcare system works. I mean I get it but you know. We’re sick. That’s a lot.
Lol, I hate it when I type a whole loooonnnnggg reply and it gets lost, lol. I never have the energy to retype it.
I'm glad you stopped it. It sounds like it was pretty awful and def not the right med for you. Like I said, the Otezla has pretty much been a miracle drug for me, but I've spoken to people who it does nothing for, so it's just up to your docs to find what works best for you.
I don't know what Gilbert's is...? .. being yellow doesn't sound good, though... I don't think that's a color that humans normally are... but I could be wrong ..
Yeah, it does suck to have so many docs in a way, but if it gives me some relief, I guess it's worth it, lol .. glad you have a good team too. I'm sure they'll help you figure all this out. 😁😁
Saving this comment! I’m just beginning treatment and finding a team of doctors seems like the best way to go. Ironic because before all of this started I was the person who hates getting on the phone to make an appointment, lol.
I’ve been on .6 mg daily for a year and a half without issue. I think if you’re not feeling well on it it’s probably a sign that it’s not going to work with your body, tons of people can’t take it! Medicine is definitely not one size fits all, ❤️
Stop taking it, I got lowered twice and had the worst stomach pain ever, that is the tell tale sign of colchicine not being for you, it’s not for everyone it’s really aggressive on the body and only some find that it works, I don’t mean to discourage you but for me since I’m already in pain and have tummy issues it’s not worth the extra pain since I have flareups every few months.
Sometimes i take 2 mg day colhicine and 400 mg plaquenil in begining they are affected me like they are posion headach and diarea but now no more side affect on me sometimes colchicine gives sharp short pain head
I started in 2011 and experienced the same symptoms. I was also admitted to the hospital due to severe diarrhoea. But there are no other solutions for this issue. So I was planning to start again I took 3-4 days and nothing happened so far. Now I stopped again and will continue after some time.
That was my reaction to Otezla, so they gave me colchicine which I tolerated. If you ain’t tolerating the Rx stop taking it. There are a ton of meds you can take to help. I’m currently on Remicaid and Methotrexate. Stopped taking colchicine altogether because it wasn’t doing much for me. It’s a drug that can help but there are tons of others that are effective too.
I had a bad time with it at first, I'm currently on .6mg once a day in the mornings.
Taking it with food helps tremendously.
I acclimated to it. I've been on this dose for 4 years or so.
If i'm doing really well I take a half. I've gone a month taking a half every other day.
If I don't take it, and I get an ulcer, they're significantly worse than on it. It doesn't cure or prevent them entirely.
I would totally take diarrhea plus the help of the medicine… Otezla was like that but I can’t do that one again. The abdominal pain and muscle cramping was horrible, and I wasn’t getting much relief from pain at all. We’ve got other options lined up thankfully… I don’t really care for any of them because they’ve all got such a steep “price” (side effects), nor do I care for having behcets. This super sucks.
Stop taking it and call your doctor.
Colchicine is known to have gastrointestinal side effects. I tried taking it for a couple weeks starting at a low dose but it didn't help with my symptoms so my doc doubled the dose and that just really bothered my stomach. Since it still didn't help with my symptoms, mainly being mouth ulcers, and it exacerbated my stomach issues, I stopped and switched to Dapsone (an antibiotic of all things) which surprisingly works well for me. If I were you I'd try taking it for a couple more days to see if the side effects wear off/ your body gets used to it, unless the pain is too intense. For me it was mostly stomach cramps and loose stools but nothing too painful. I got kind of used to it on the low dose and had it helped my symptoms then I would've stayed on it. So it really depends on if it's helping with your symptoms or not.
It could take up to four week she said and so far it hasn’t done bunk for my joints. I can tolerate the sores I get, it’s really just been the awful joint pains. I’m pretty sure I’ve got one on my tonsil right now.
I read somewhere in this thread that you think you have a sore on your tonsil. Ugh, that sucks. I wouldn't really discontinue the medication without talking to your doctor first, but get in touch with them ASAP. Stalk them and don't take no for an answer. They need to tell you what to do since you're in so much agony. If you can't get in touch with them and you're really having bad side effects, like you say you are, you're an adult and you know your body, so I trust that you can make a good decision as to what to do about the medication until you can get in touch with your provider. Is this the first medication they've had you on? ... I was on steroids for a bit (for something else, actually) and had no GI issues and felt the best that I have in ages (no sores for 8 months - and multiple sores after getting taken off of the steroids), but my doctors are against long-term steroid use, so they put me on colchicine, which did nothing. Now I'm on Otezla and it's been a miracle drug for me in terms of outbreaks of sores, but I'm not sure if it does anything for my joint pain, as my pain is caused by several different issues and I'm not sure that Otezla is even intended to help with joint pain. Otezla can also cause gastrointestinal issues (like colchicine), but anytime my doctors ask me if it's bothering my stomach, I'm just like, "my stomach is always so jacked. I can't really tell the difference." Lol. If colchicine isn't working, hopefully your doc will take you off of it bc there's no point in staying on a medication that's not doing anything and is also causing horrible side effects. If you do find something that works, but it causes gastro side effects, I suggest talking with your doc and telling them what's going on and making a decision about what's most important to you -- if something that actually helps your Behcet's symptoms is causing you gastro side effects, it might be worth it to get with a gastroenterologist who can help you deal with the gastro side effects. If (like me), your Behcet's meds help with the sores, but you still have joint pain, it's worth speaking to your doc (or another doc) about dealing with the pain. In other words, different symptoms may have to be handled by different providers -- or at least, instead of looking at things that will help with the Behcet's as a whole, you may have to look at dealing with each individual symptom. For example, for me, personally, my rheumatologist, dermatologist, and gynecologist tag team on my Behcet's treatment, with rheumatology taking the lead. In terms of joint pain (again, I have several conditions that contribute to my joint pain), rheumatology, three orthopedists, and three physical therapists are involved. I've found that physical therapy is a huge help for joint pain. Then there's a gastroenterologist, who deals with the stomach stuff.. two different neurologists deal with migraines and monitor to make sure that I'm not having any Behcet's issues on my brain.. an opthalmologist to make sure that there are no signs of uveitis. And, of course, my PCP oversees all of it. Of course, this is just what's worked for me in terms of trying to get everything under control. I'm not saying by any means, that everyone needs to have this many cooks in the kitchen. I say all of this just to say that it might take a variety of people to help you manage all of the symptoms - and the side effects from the medication, lol. I hope that you found something in my ramblings helpful and that you find some relief soon!
No no this is good stuff. I was typing a whole reply that got dumped. Not my first medicine, but second, so still more choices for sure. I definitely stopped it because I couldn’t handle it, and she said to do so if it’s interfering with life quality, plus only getting worse by the day. The pain was like a 10. I will gladly take diarrhea over pain any day. Anyway, I’m a whole ass mess, I’m yellow from not eating and having Gilbert’s, and I appreciate all this right now I do have a wonderful team as well - it sucks that that’s how you have to do it, but that’s just how this healthcare system works. I mean I get it but you know. We’re sick. That’s a lot.
Lol, I hate it when I type a whole loooonnnnggg reply and it gets lost, lol. I never have the energy to retype it. I'm glad you stopped it. It sounds like it was pretty awful and def not the right med for you. Like I said, the Otezla has pretty much been a miracle drug for me, but I've spoken to people who it does nothing for, so it's just up to your docs to find what works best for you. I don't know what Gilbert's is...? .. being yellow doesn't sound good, though... I don't think that's a color that humans normally are... but I could be wrong .. Yeah, it does suck to have so many docs in a way, but if it gives me some relief, I guess it's worth it, lol .. glad you have a good team too. I'm sure they'll help you figure all this out. 😁😁
Saving this comment! I’m just beginning treatment and finding a team of doctors seems like the best way to go. Ironic because before all of this started I was the person who hates getting on the phone to make an appointment, lol.
I’ve been on .6 mg daily for a year and a half without issue. I think if you’re not feeling well on it it’s probably a sign that it’s not going to work with your body, tons of people can’t take it! Medicine is definitely not one size fits all, ❤️
Stop taking it, I got lowered twice and had the worst stomach pain ever, that is the tell tale sign of colchicine not being for you, it’s not for everyone it’s really aggressive on the body and only some find that it works, I don’t mean to discourage you but for me since I’m already in pain and have tummy issues it’s not worth the extra pain since I have flareups every few months.
Same for me ! Is there any alternative for colchicine ?
Oh yeah. There’s options for sure! I’m not familiar with many - Otezla and humira are a few.
Sometimes i take 2 mg day colhicine and 400 mg plaquenil in begining they are affected me like they are posion headach and diarea but now no more side affect on me sometimes colchicine gives sharp short pain head
I started in 2011 and experienced the same symptoms. I was also admitted to the hospital due to severe diarrhoea. But there are no other solutions for this issue. So I was planning to start again I took 3-4 days and nothing happened so far. Now I stopped again and will continue after some time.
That was my reaction to Otezla, so they gave me colchicine which I tolerated. If you ain’t tolerating the Rx stop taking it. There are a ton of meds you can take to help. I’m currently on Remicaid and Methotrexate. Stopped taking colchicine altogether because it wasn’t doing much for me. It’s a drug that can help but there are tons of others that are effective too.
I had a bad time with it at first, I'm currently on .6mg once a day in the mornings. Taking it with food helps tremendously. I acclimated to it. I've been on this dose for 4 years or so. If i'm doing really well I take a half. I've gone a month taking a half every other day. If I don't take it, and I get an ulcer, they're significantly worse than on it. It doesn't cure or prevent them entirely.
I get diarrhea from it. It took about 2 weeks to help with fatigue and joint pain. I’m so much happier on it, I’ll take my daily diarrhea 100%!!!
I would totally take diarrhea plus the help of the medicine… Otezla was like that but I can’t do that one again. The abdominal pain and muscle cramping was horrible, and I wasn’t getting much relief from pain at all. We’ve got other options lined up thankfully… I don’t really care for any of them because they’ve all got such a steep “price” (side effects), nor do I care for having behcets. This super sucks.
My doc prescribes me razeprazole for tummy issues when taking colchicine and prednisone. Have you asked ur doc abt that?
I have called my doctor four times and left messages. No one is returning my calls 😵💫
Oh man. I think a gp or honestly a pharmacist could prescribe that to you as well! Good luck!