There is so much going on currently and things are changing daily, therefore I have decided to keep a current blog to cover the present! What’s going on now! As it happens!
I will post again once things progress!
Whilst I was at the hospital for Bile Salt malabsorption today I also had an X-Ray done to rule out the risk of tuberculosis, this is so I can be put forward to biological treatment.
I have been debating which trial to start since meeting with my consultant a week ago.
Entyvio (vedolizumab) or Stelara (Ustekinumab), both have similar success rates and are very different treatments, in brief, Entyvio is just effective on the gut and administered via infusion, built up over time, it was recently licenced in the UK for Crohns and Colitis and comes with risks of unknown side effects and little research long term, however, positive feedback so far. Stelara is a symptomatic treatment, it is currently licenced in the UK for Crohns disease but has a history of use for other reasons such as Psoriasis, it has less known side effects and more clinical data available. Both have had positive outcomes, and both have extreme health risks and implications, they are also very different to the previous treatments I have had, Infliximab and Humeria.
I have researched both and spoken with my pouch nurses and IBD nurses at St Marks for advice and guidance. I have been extremely alarmed by some of the risks associated with Vedolizumab, mainly reports suggesting a high risk of irreversible brain nerve damage and mental health issues as well as suggestions of it being addictive and risks of overdose. I have taken this into account in conjunction with feedback from others and decided, that Vedolizumab is not for me.
Stelara has often been used in cases where Vedolizumab has failed or not been tolerated, therefore as I don’t have the energy to try any further trials if the next one fails, I have decided to go straight to Stelara for my last chance.
I have today spoken with the IBD nurses at St Marks and they have booked me in to talk to the team whom manage biologics and from there I can be booked in for treatment in 3 weeks.
Ironically as my initial thought was to go ahead with Entyvio, my pouch nurse advised me today that I had received approval, therefore although they were slightly baffled as to why I had changed my mind, they are now reviewing my application for Stelara!