Thank you Sarah- I did ask for slow ramp up and one drug at a time but this was what he told me to do! I will feel my way and if my body which is very sensitive seems to be challenged by his approach will ask for possible slower start. He seemed to believe an aggressive approach is necessary. Thank you for the book recommendations I will get them both!
Keep me updated on your bloodwork! Mine tends to go up and down erratically so not sure how I will know the drugs are working! My liver enzymes will spike wildly then drop back down to almost normal!
I’ve tolerated them well. I actually started the URSO and then a week later the Budesonide so I could attribute any side effects to one or the other. I felt a bit off when I started URSO so reduced the dose for a few days (one a day, then 2 a day, then 3). You may want to ask your Dr if they are ok with that approach. I was really nervous about the steroid- I felt a little buzzy at first but have been ok as time passed. As for azathiaprine, I’m on it 8 weeks now and I think I feel ok?… I have been feeling a little more tired than usual but I don’t know if it’s the drug or disease. I get blood work tomorrow and am hoping I’ll still be in normal range 🤞
I’m not sure if I already shared this with you, but there are 2 great books downloadable via Amazon by Professor David EJ Jones OBE (from the UK) AIH the Definitive Guide for Patients with Autoimmune Hepatitis (volume 3), and same title for PBC. Both books go in depth about the disease and treatment and both address overlap.
Thank you so much for your reply, Sarah. So reassuring- How have side effects been from each of the three drugs? I am feeling nervous about side effects or reactions to the drugs?
Hi Robyn. I have the same diagnosis. I was started on URSO(for the PBC) and Budesonide (AIH) in October. I showed a complete response (all numbers normalized) in December so my hepatologist added azathiaprine (also an immunosuppressant like Celcept for long-term control of the AIH). I believe I am in the transition period from disease control to maintenance and will (fingers crossed) be able to taper SLOWLY off the budesonide and continue the azathiaprine and URSO indefinitely. I’m having my blood checked monthly and have my next check up in March.
To answer your question more directly- yes it’s normal - you have to treat both conditions.
what about. the third medicine, cellcept, is that a normal prescription for aih/pbc overlap?