A few months ago, rheumatologists Dr. Hasan Yazici (in Turkey, considered the world's expert in Behcet's) and his son Dr. Yusuf Yazici (runs the Behcet's Disease Clinic in New York City) taped an interview between themselves discussing Behcet's Disease and its current treatment.
The YouTube tape is a bit long and slow, but I wanted to mention their discussion of the limits of colchicine at minute 24:46 on the YouTube tape. Dr. H. Yazici states he wishes that other doctors would not choose colchicine as a first-line treatment for Behcet's patients, with some caveats.
While the Yazici's describe a number of medications, they do not mention some other potentially useful treatments that I know they've prescribed (from personal conversations and emails with them), possibly because of the lack of extensive research into them. For example, I know that they've prescribed Trental (pentoxifylline) and nicotine patches, but they don't mention those in this interview or their published articles.
Still, other Behcet's specialists continue to promote the usefulness of colchicine, such as Dr. Davatchi in Iran along with authors of many general articles about Behcet's. Even in a recent BD research article with Dr. Yazici listed as a supervising author, colchicine is identified as a common treatment.
It's important to keep in mind that there are quite a few different treatments for Behcet's symptoms and many differences between doctors (and countries) on prescribing patterns.
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amietamant
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Colchicine does have a place though - it virtually eliminated my ulcers (oral - I don't get genital). I came off it for over a year in order to lighten my medication load and within a couple of months (can't remember exactly how long) back came the ulcers. I now consider colchicine to be my main symptom reliever drug
What did you think of the discussion about colchicine on the video? I'm glad colchicine helps you and that you're able to tolerate any side effects. Some patients have difficulty adjusting to colchicine, especially at the doses required to calm their Behcet's symptoms. Gastrointestinal distress is a common side effect which, in some people, can go away with either time or a change in dosage.
However, research shows that a percentage of BD patients are colchicine non-responders, meaning that no matter how long it's prescribed at various doses, it will have no beneficial effect. More study needs to be done on this finding:
Yes, I admit I had forgotten that post. No matter what drug or disorder said doctor was discussing that was a bit of a sweeping statement!
I know I'm lucky to get away with (I believe - I don't know what's going on inside) nil side effects from the colchicine. It has certainly made my life a little less painful. However, two of my close family have gout - one of them at an incredibly young age - and I wonder if there is some linkage between their gout and my BD, given that colchicine is usually prescribed for gout. I confess right here that I have done zero research and I'm unlikely to do any in the foreseeable future, given that BD throws just a bit more than oral ulcers in my direction.
My daughter was put on 5ml steroids then 6 months later colchicine. I felt that it definitely worked for joint pain but no help for ulcers. Now after yet another huge flair, I don't know if any of her medicines are working. I wish there was a magic wand for it all to go away.
In November I was taken off colchicine and started on Azathioprine. The Aza is working well for lots of symptoms but my ulcers (esp nasal and genital) have returned with a vengeance. They had been really well controlled under the colchicine.
I was hoping to ask if I could go back on the colchicine in conjunction with the aza - anyone else do this?
When I was initially diagnosed and was overrun with ulcers, my consultant told me that colchicine would help the ulcers - which it did, admirably. But I was led to believe that it was for ulcer management only and not for the rest of our 'ills.'
Good to hear Rainstormie I'm on Colchicine now and looks like I will start taking azathioprine (Imuran)
this week, I'm praying to heaven I also have a positive response . Are you still f
Doing well ? I'm new to the world Behcets and like many if you it is testing my will to live . I'm shocked by what fate has sent my way . I'm very open to any suggestions , to anyone reading this post please feel free to give me your 2 cents on treatment or coping strategies . I also want to share a bit if success on one battle field . If any of you out there have Chronic diarrhea , gas and hemorrhoids that have come along with Behcets you must ask your Dr. For Xifaxan . Apparently folks with our issues can get a stomach Bactria and Xifaxan was a amazing !!!! Overnight cure for the stomach but still have all the other horrible stuff . Stay strong every body
I was on azathioprine for over 10 yrs, unknown to me that it can cause cancer, it wasn't until I was diagnosed with melanoma Feb this year that dermatology told me this, it is a very powerful drug. I have been weened of this onto colchcine, once I have got over the nausea it has been fine
I had been on colchicine for many years. It worked really well for me and if I come off it , due to stomach problems my ulcers always came back with a vengence. However about 18 months ago I began to have abnormal liver elevations in my blood tests .my ALT went up to 254 and the APHOS went up to 197 . I asked the consultant if it could be the colchicine . He all but laughed in my face and said colchicine does not have that effect . My gut feeling told me he was wrong I was taken off aziathioprine 4 months before for the same reason with no effect on the elevations . I went to see my GP and asked if he would monitor me whilst I came off the drug , he said yes and also said that colchicine was contra indicated for existing liver problems any way . I went for a blood tests two weekly . My liver ALT score dropped dramatically and it is now within normal range the other test is taking longer due to a flare up of behcets .
I wanted to share this because I've always taken care of my liver , I don't drink and never have so was surprised . I've since read up on colchicine and it can affect the liver but it is not a common side effect . I'm not trying to frighten anyone because it does work well , I think I'm saying with this disease we are often the experts because of its chronic and rare nature .
I couldn't agree more. There are many times when I 'know' what the problem is but it takes the medics months (or years in one case) to catch up with me. And, of course, until they do catch up we're left struggling with the problem.
Like this heart failure. It was initially mentioned 18 months ago but I've had no doubt that's what the problem is. It was finally confirmed in the last couple of weeks! I didn't know it was heart failure as such, the heart is far from my area of expertise, but I knew beyond the shadow of a doubt that there was something wrong with my heart.
It's not always easy to be assertive with the medics. I worked with them for decades and they hold no mystique for me, yet still I will sometimes be unassertive (unless its on behalf of my children of course!). I think that's probably the way my generation was brought up - doctors and policemen were heroes don't you know!
Well said , I had been suffering the effects of my liver problem for many months , it felt frightening at times because I felt unwell with no where to go . Once I took control myself ,I felt better but still worry about next time . I have always stoically managed this since 1983 but as I have got older it has got harder to do . I will carry on regardless x
I was on Colchicine when first diagnosed and they got rid of my severe gential ulcers. I had to come off it 2 weeks later as it raised my ALT's in my liver. Tried Aza but vomited prefusely on it so now on Methotrexate. I have been given a small dose of Colchicine to carry with me and to take if ever the genital ulcers come back. Thankfully 3 years later they havent returned just get the odd ulcer in my mouth and body ulcers. Painful body ulcers but better than the genital ones I had constantly for 2 years.
I guess everyone has different experiences with different drugs but personally Colchicine worked for me intially
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