DVT and now diagnosed with Behçet's

[somn]

Hi all, just wanted to introduce myself and my story. I am a 38 year old male. I have suffered from small but fairly regular mouth ulcers for years, but they come and go. About a year ago I had some pain in my ankles and leg, which lasted a couple of weeks but went away of it's own accord. It felt like a bruise on the ankle and slightly tight shin. The ankle issue came and went a few times over the year. Then in Jan it flared up again quite badly but when away. I was just taking ibuprofen for the pain.

We are having a baby in April and I was concerned about the leg issue so went to the GP who referred me to rheumatology for some more blood tests. I had had blood tests about this before and sometime the inflammatory markers were a little high. One week later my left leg felt very tight and sore... so back to the GP who sent me straight to hospital where I was told I have a DVT in my leg. They put me on the blood thinner apixaban.

Needless to say this was quite frightening, both for myself and my heavily pregnant wife! This was 1 month ago... and my leg is feeling better but not 100% yet.

Last week I was back at rheumatology where the consultant told me he very much suspects I have Behçet's and put me on Prednisolone and then planned to put me on Azathioprine 2 weeks later. However, with COVIT 19 happening I was worried about my immune system so 2 days later I spoke with my GP who advised it might be best to delay that treatment and stick with the blood thinner for the moment to stop any further blood clots until it's safer to start the other drugs. I also spoke to the consultant who agreed it might be for the best at this time.

I am still fairly concerned about how my immune system would deal with covit-19 if I get it, and of course I also worry that I might have other flare ups in my legs or other parts of my body... just hoping the blood thinner (apixaban) will stop any further clotting.

Under normal circumstances I would of course be on the steroids / immunosuppressants, and I hope me delaying them won't cause any problems.

I still need to find out more about Behçet's. I'd love to hear any comments or advice anyone might have.

Thanks in advance!

[Lovingdragonflies]

I would from my experience strongly recommend seeing a hematologist. There can be a lot of underlying issues to blood clots. Behcet’s doesn’t cause my blood clots. I have it, but for me it’s a protein S deficiency that is hereditary. Wisdom from a hematologist can save you a lot of pain, and may help you as regards to use of blood thinner use in the future. My hematologist is a big part of my health team.

[somn in reply to Lovingdragonflies]

Thanks very much, yes I will certainly do that... once things settle down with coronavirus