Doctors

[pete11]

Hi guys hope your all well or as well as we can get. I have had a very interesting day today at hospital. I went to see my consultant at local hospital which I have been under for a long time but he past me on to one of his reg which seemed to think that Bechet's is not rare and he sees many people in my local areas with Bechet's which my response was if that is the case why is there only three centers in UK dealing with this RARE disease. I get fed up with drs just looking up on the internet thinking they know about it when they don't. We have to live with this terrible disease and try to battle on with pain ulcers ect. For a Dr to tell me it ain't rare and that meds should start quickly.I'm on imuran and entacept injections have been. Why are we past from Dr to Dr and they don't help. I go to Liverpool every 3 months under prof moots but local Dr is just not helping.

So let's see what other people think and know is Bechet's a rare painful depressive disease with sometimes no light at the tunnel.

[sam0511]

Sorry you are having this problem - my experience with my doctor is the total opposite. I can only suggest keep seeing different doctors. I am very fortunate that my local surgery is possibly one of the best you will get , ditto my hospital in Derby. The mouth ulcers are awful, but this wretched disease seems to be worse in men than women, so mine were bad - yours must be much worse. I used to use a topical meds that you could buy over the counter. They stopped making it because it contained steroid, which explains why they healed so quickly. The only other topical treatment I use is iglu, it doesn't heal but at least it gives temporary relief so you can at least eat something. My ulcers would get to the size of a 2 pence piece sometimes - but as I have mentioned before - I stopped taking/eating/applying anything anti-inflammatory which definitely made a difference. Since taking Azathioprine I have no ulcers at all. Why won't your doctor or consultant prescribe this for you? You have probably asked before anyway, just wish you could get some relief.

Keep well

[pete11]

Hi thanks for the reply I am on Azathioprine and a entacept injections. But they are taking some time to work. I understand it takes a while to work but just get fed up with doctors just passing me about I want one good consultant so I can gain trust with him or her. It is my life they are playing with we are the ones in pain can't do daily activities can't walk to pick up kids ect. I just don't understand why all my local doctors don't do just a small amount of research on Bechet's and learn that we have a disease that ain't nice.