help?

[freckles66]

My doctor just called to tell me that the HLA ABC sequencing test he ran came back with markers for Behcet's, but he doesn't feel ready to diagnose me. He wants to start me on colhecine to see what happens.

any wisdom would be most appreciated.

[devonshiredumpling]

But why is he starting you on Colchicine? What symptoms do you have? There is little point in taking meds just because you have Behcet's markers! Markers simply reveal a tendency for the disease, they don't signify that you actually have the disease.

[freckles66]

i have been seeing him to discover why i have such horrible joint pain.

i'm so confused.

[Zebra]

It makes sense he is starting you on colchicine. I imagine you are getting ulcers, joint pains etc and colchicine is the first medicine on the pathway for Behcet's and particularly targets those symptoms. It is also a safe medicine. It can take years to get a confirmed diagnosis of Behcet's and often they will watch the clinical picture as there are no tests and see how symptoms respond to treatment. Colchicine can unsettle your stomach and cause diarrhoea so increase gradually. Many find it is sufficient treatment and works well. Also, ask your gp to test your vit b12 and d levels as they can be responsible for causing or making these symptoms worse, especially joints.

[billi]

Hi as a sufferer of BD for 28 years I am a little concerned with your question. You say doctor was this your GP? Also there are no specific markers or tests for BD. What symptoms do you have aside fro aching joints and how long have you been suffering? I ask because although there is nothing wrong with Colchicine per say it is very, very important (as most of us know) to get the right treatment and that is difficult until you have the right diagnosis. There are many, many autoimmune diseases and often the symptoms overlap and make diagnoses extremely difficult. Behcets was once described to me by a very affluent doctor in this field as .....a disease of many diseases. And it is so true as most of us can testify when trying to get a diagnosis . Please let us know how you get on and keep in touch.

Hugs

Billi

[AusBehcets]

I was given Colchicine by my Rheumy to try, with the warning it may cause myopathy. I experienced fairly immediate muscle weakness in my arms so I stopped it.

I never got a diagnosis from him other than 'widespread arthropathy', knee bursitis. I got to try Plaquenil & Arava (Leflunomide) too. Had referrals for facet block injections.

[freckles66]

he went ahead and called it.

he is an excellent rheumy and is consulting with a Behcet's specialist at the hospital they are both affiliated with (NYU in New York City). The hospital has it's own Behcet's Center which I expect I will be visiting at some point.

i am relieved to finally have an answer to more than a decades worth of misery...and the Colchicine seems to be helping in small ways.

Thank you for your replies.

Michele