New diagnosis and colchicine.

[Masie7]

Hi all, after many years of mis-diagnosis, I got my diagnosis of behcets just yesterday. I joined the site on the advice of the rhumatologist. I'm both pleased to get a diagnosis and gutted as I feel so scared. I'm starting on colchicine. I'm wondering about anyone's experience with these tablets? I'm in Northern Ireland, does anyone know of support groups here?

Thanks x

[Jale]

Hi Masie

It was scaring for me too been diagnosed with Behcet but in another hand was a big relief, I felt that now I was having help with mouth ulcer and a better understanding about what was going on in my body. Doctors used to say that it was stress and I needed to deal with it. I was doing therapy and trying my best to deal with stress and I couldn’t see any changes, my mouth was painful most of the time and it affected my every day life including my mood. So having a diagnosis was the start of a new better journey.

I used colchicine and it helped me a lot with the ulcers and skin rush, but I have IBS and colchicine upset my bowel so I they changed it for Thalidomide. I hope colchicine works for you.

I live in England, here we have a charity called Behcet’s UK, I am sure you can contact them for support.

I hope that you start to feel better

Jose

[Masie7 in reply to Jale]

Hi there Jose

Thanks for yr reply, it’s such a relief to know I’m not alone! Starting the tablets today so fingers crossed!!! Hope yr feeling better xx

[ydt1983]

Hi Masie. I was recently diagnosed and put on a low dose of colchicine, it has literally changed my life, I have only suffered one outbreak in 4 months since I have been on the tablets. Mouth ulcers are now none existent where previously I suffered with them every single week! . I don’t have any side effects from the tablets.

[Masie7 in reply to ydt1983]

Hi ydt1983.

Thanks for the reply, I’m so glad the tablets have helped you and I’m really hoping for a positive outcome too.

Keep well

XX

[marlene123 in reply to ydt1983]

Hi. Thanks for your feedback. I was recently diagnosed to as having a very mild case of BD as my symptoms are mainly mouth ulcers but I have them nearly all the time. I was prescribed low dose (twice a day) of colchicine but I'm a bit scared to start medication as I fear the side effects on the long term and don't want to heal one problem and start another...

Your feedback was reassuring. Thank you xx

[ydt1983 in reply to marlene123]

Hi Marlene. I have had no side effects from the tablets at all, I honestly cannot tell you how much they have changed my life. I was in constant pain with mouth and also genital ulcers. Xx

[Melissapol]

Hi Masie,

I also was just recently diagnosed. I’ve been on colchicine for several months now and while it definitely helps, I continue to get mouth ulcers. I adjust my dosing between 2-3 doses per day depending on how my stomach is responding. My body definitely needs the higher dose but my stomach can’t handle it. I’m waiting to get approved for Otezla so I’m hoping that will help. Many seem to get good results with colchicine though so hoping it will help you. Good luck.

[Masie7 in reply to Melissapol]

Hi melissapol

At my last flare I was on 2 a day and it def affected my tummy! It wasn’t pretty lol!! But I’m hoping the one a day maintenance dose won’t be so bad!

Keep well xx

[gillianTS]

Hi Masie7

Colchicine is a great drug for so many BD sufferers and initially it was very helpful to me but unfortunately after around 10 weeks I developed a most awful rash all over and painful joints, I had a toxic reaction to the drug and taken off it straight away, my liver enzymes were sky high, I think I recall my GGT levels being over 350 instead of a high of 36, it took months to lower my GGT levels to the correct range.

What I would advise is to get a liver function test to check your enzymes after about 6 weeks just to be sure, I had complained 3 separate times to my GP about not feeling great but was told everything was fine it was only when I emailed my rheumatologist did she instantly remove me from the drug and called my GP requesting blood tests.

As I said earlier so many people take this medication with no issues, please be mindful of how you feel and make notes of any changes, good and bad, it was a wonder drug for me at first but my body would not tolerate it and a pity my GP never checked my blood earlier.

Best of luck with reducing your symptoms.

Gillian

[Dorisi2i]

Hi, I was diagnosed with Bechets early last year and have been taking colchicine and ketotifen since. I know lots of people have reported struggling with the drug but my own experience isn’t too bad and it certainly keep my flares, mostly at bay. Some days I can end up feeling nauseous and have mild stomach ache but this is nothing compared to how I feel without taking it. Every so often I will take a day off (my doc probably doesn’t approve)...this inevitably leads to a flare but I feel it prevents me from becoming intolerant to the drug...laymen decision...may not be the smartest but it works for me.

I’m nervous about the drug as you can’t mess with it and risk over dosing. I use a weekly tablet box, so I know if I have taken it or not, which helps as I’m incredibly forgetful.

I had Alopecia and neuropathy before taking the drug, so I can’t comment on those side affects but the Ketitofen really helps me balance those side affects too and since taking that my alopecia has actually cleared up 😊

Good luck in your journey xxx

[Masie7 in reply to Dorisi2i]

Hi doris i2i

Thanks for the reply. A pill box is on my list, I m so forgetful as well ! So far so good with the drug. But it’s only been 4 days .

Keep well xx

[muttiof3]

Colchicine has been a constant for me for 20 years and it keeps my Behcets mostly at bay. Some things I have learned in regards to my body and Behcets...

Stress causes flairs

Refined sugar and other refined carbs causes pain

Alcohol (darn it) causes pain - enough that I hardly drink anymore

Kombucha and oatmeal, both of which I love, cause body ache

and

A good yoga instructor has been wonderful for me. She encourages us to ignore what everyone else can do and listen to our own body. She doesn’t take herself too seriously and we actually laugh in class. I love it and just like choosing not to have a kombucha because I don’t want to feel like crap is easy, going to yoga has become easy because I feel good after.

Oh, a good counselor helps too

When I got diagnosed I was nervous about starting the different meds too. The most important thing is to pay attention to your body’s response to the things you put into it and communicate that to your doctor if necessary.

I’m in the U.S. and no one really knows about Behcets here. I’ve had to become my own specialist. Start researching and learn about Behcets. This site has been good for me because it has consistently shown me that Behcets manifests itself in many different ways. While the following sounds like a joke, it wasn’t... I told my primary care physician that the way both rheumatologists diagnosed me was to put a drop of water on my thumbnail and look at it with a magnifying glass and then found the pimples on my butt and said, “You most likely have Behcets.”* I then told my doctor that Behcets is basically inflammation of the small blood vessels. Any of these things (various issues over the last 30 years) could be Behcets.

*I feel the need to say here that I had lots of tests to rule other things out before I got to this point. So these doctors had that information too. Plus, with my first flair, I met all the primary and secondary criteria for Behcets. So they did have info, but, come on...

Bigs hugs to everyone out there🤓