I was diagnosed with Behcet’s disease in 1980. I have been treated at my local hospital by a consultant who trained with a Behcet’s expert years ago, he treats many people with BD and has treated me with infliximab for 15 years. Our treatment is tailored individually for our needs, this may include raising or lowering the dose of infliximab accordingly. Two years ago we (being those of us with Behcet’s on infliximab) were told the funding for our treatment would now come from the centre of excellence and we would all have travel there at least once a year. I'm afraid none of us wanted to go because we were happy with our treatment, but we were forced to go! At the centre of excellence we were all told we should change our treatment to the self injectable adalimumab. Although one other person and I refused to change, all the others agreed to the change of treatment. They agreed because of social reasons not medical reasons, for example one person thought it would save her a long journey to my local hospital, another said it would mean less time off work. However, all those who changed treatments ended up feeling worse and having flare ups. They are all now back on infliximab, but not at the dosage they were on before because the centre of excellence is only allowing them to have 5mg/kg for 6 months! What is the point of all this? Before, their dosage, as mine is, was tailored to their individual needs, now it isn't. I spoke to someone at NHS England about this and they said if 5mg/kg does not control the disease it should be increased, but of course this is not happening. I'm just pleased I refused to let them bully me into changing my treatment.
Behcet’s Centre of Excellence Does Not Work fo... - Behçet's UK
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