New medication and tests: I had a follow up... - Behçet's UK

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New medication and tests

Soph19 profile image
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I had a follow up appointment a few days ago things haven't improved much since taking predisolone. The predisolone has been reduced slightly and I've now been started on a low does of Colchicine I just wondered if this has helped anyone with there pain? My mouth ulcers and styles have become less frequent since taking predisolone but the pain over my body is just getting worse and worse and becoming to effect my sleep. I've always got headaches every now and then but a couple times recently I've had headaches possibly migraines that have been so painful my head feels like it's pulsating then I would feel sick and get shaky which I explain to my doctor and he sent me for a MRI on my brain today and I asked why and he said with behcets you can't take any chances. Does anyone know what they look for in MRI's for behcets?

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Soph19
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billi profile image
billi

Hi sorry for your pain. Colchicine is well used drug amongst a lot for us with BD. I managed to stay on it for 6 years but had to stop due to a stomach bleed. Having said this it worked for me, gave me my life back for a while. All the drugs we take do have side effects and it's a balance between which is worse the side effects or the disease itself. I am now in my 32nd year of BD and I've had my ups and downs. The first 10-15 years were hell but once I was diagnosed after about 5 years and the right meds and more knowledge of the disease itself I have learned to go on to have a near normal life. Little steps, part time work, learning to rest when my body tells me, staying positive and being strong. I brought up three children alone and there is no stronger impetus for staying strong.

As to the migraines, we all have headaches with BD but it's part of the pain syndrome but the doctors will want to rule out Neurobehcets and will be looking for this. Try not to worry, quite often it is just headaches.

Hope this helps and wishing you well.

Billi

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UKADMINPartnerBehcet's Syndrome Society

How did you get on with the MRI?

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