Back in limbo

Hi everyone been back to dermatologist and asked for a referral to the Behçet's centre in Liverpool and asked him to put me on colchicine which I've been on 5 days now and I'm on 30 mg of pred and everything has cleared up no ulcers no swelling Im feeling normal again but got a phone call today off the dermatologist saying he's taking me off the colchicine because he thinks he diagnosed me wrong and I don't have Behçet's arrrgh he wants to do more tests and take another core sample which he's booked me in for on Friday so I feel like for 5 days I've been on the mend and now back in limbo 2 steps forward 7 back

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  • Hi poor you.....we all know what it's like up the crash bang down. Still if it was working because Colchicine was developed for people with GOUT but found to work in other ways. I wonder if he is taking you off so that he can do the tests for what he thinks is the problem? Maybe he will the put you back on it?

    Good luck and let us know how you get on and your diagnosis.

    Billi

  • Thanks Billi and hope your right

    I will keep you updated

  • Screw your dermatologist. Get a second opinion.

    I would be careful of prednisone though because it how fast it works...it's hard to know which drugs and which symptoms persist. Colcrys is great for ulcers, but so is prednisone. you'll have to see how you do on just colcrys.

    Find a different dr. Most of us have been misdiagnosed for years. Don't give up.

    Why is the dermatologist giving you the recommendation? Where is a general GP? Did you say there was a centre of behcets over there?

    Hold your ground with this derm. Get your recommendation and be done.

    There is no "tests" for behcets- just correlations and blood work which can show spiked levels and inflammation. Behcets is diagnosed off symptoms. As far as I'm concerned with this overwhelming world of symptoms and behcets- if you've got oral and genital ulcers- you've got behcets. Give me another disease that causes these lesions by pure inflammation.

    sorry this response is so jumbly. just woke up.

  • I would still ask my GP to refer me to the Liverpool CofE if I were you. It would be great if you could let your GP know how much better you have been on the medication you original had. He/she may repeat the prescription while you wait for an appointment at Liverpool CofE. Obviously your dermatologist is no expert in rare vascular diseases, so it would be great to actually see one.

    We are a rare group. A friend of mine who is a GP says she feels helpless when people like us visit her, because she is absolutely sure we know more about our condition and the disease than she does. I wouldn't blame your dermatologist, he is in the same boat. I have found out through the years that we have to be very patient patients.

    Good luck. Heres hoping you don't have to wait ages for a CofE appointment.

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