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I am on a 20 wk waiting list. Should I ask gp to prescribe the tablets. I feel very ill, nauseous and struggling to eat and the constant pain under my ribs is driving me insane. What should I do?
Thank you everyone!I now have a new gp who is excellent and she is going to expidite the referral tomorrow whilst I am there. I collapsed with an ischemic bowel bleed which was horrific and she said it is connected to the autonomic disfunction I am experiencing. I ended up having an emergency appendectomy 2 days after the colonoscopy and it is finally being taken seriously. Thank you everyone for your help. I will update tomorrow after the doctors.
@A myPBCteam Member that is a v long time to wait - I’d ask your GP to prescribe you urso now. No harm in taking it now, it’s a safe drug and specialist sometimes prescribe it to people who are high risk (maybe their Mum has PBC and they have high ama but enzymes are ok, and they do this knowing it’s safe to do). You have elevated enzymes, there is a known treatment and you should be started on it sooner rather than later - not in four months time- most likely outcome is your enzymes will start to get under control, Urso won’t cause you at harm otherwise.
Another option if you want to be 100% confident in asking your GP to prescribe you Urso now is email the PBC Foundation - they can ask one of their medical advisors for you - who I’m sure will say start now and then you can have the confidence to push your GP. You should t have to wait months to get a simple easy treatment that can start to get your liver enzymes going in the right direction.
https://www.pbcfoundation.international/
@A myPBCteam Member wishing you well and that you get what you need asap - do keep us updated ❤️
Thank you ❤️
@sonyafleming’s here is my shortened version of advocating for you. I would suggest you bypass everyone and go to Emergency asap!! . If you live in a big city they will either have a hepatologist come in to the ER to see you or if there isn’t one the Er doc will know to prescribe urso. If he doesn’t (I would be surprised) ask him to prescribe urso for you.
If you live in a rural area same scenario, ask for urso.
The docs are using machine intelligence now (AI) and they will get it. The wait time is too long and you need to go on urso asap!!!
Good thing you found this group!!!
Good luck!
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