Just received my latest copy and there is a very helpful article on questions to ask your doctor link as
easl.eu/medias/cpg/Primary%...
Hopefully I have copied this correctly, anyway I wis I had read this before I was diagnosed with the AIH overlap and had nearly 3 years of,unnecessary steroid treatment.mhope it helps
This is quite interesting and funny because I just was going post a picture which seems very similar to PBC disease progress depicted in the above article. I cannot put the picture here unfortunately.
Thanks, Biddyb.
Your link goes on to the EASL guidelines and not to our lay version. Just checking that is what you wanted to share.
It5's an incredibly helpful and important document, but a little heavy for mortals, which is why we published our lay version, with what we hope are helpful tips from both clincians and patient advocates.
Ahhhh.... That will be on our website very soon.
It will be in the section for our members. The log in details will be the same as the app ones.
I read it today. Great info. 👍
Thank you so much for sharing this. I had to skip over some deep medical jargon but basically i could see how my medical provider is following the steps mentioned in here and gave me a much more complete understanding of my own situation. (Originally thought AIH/PBC overlap, then evolved to only PBC, hence no liver biopsy, etc.) huge thanks - O
Glad it was useful I too was diagnosed unnecessarily with overlap so I was relieved to read the article and hope it saves some sufferers from going through the same. My consultant seemed to think i was an automatic overlap contender and prescribed steroids that I didn't need. I have to confess though I only meant to post the "question for doctors" part not the whole 28 pages
"The Bear Facts" August 2017 newsletter IS available on the PBC foundation website. It has a great annotated version of the guidelines-- and really covers all aspects for patients-- questions to ask drs. Etc etc.
You have to join the foundation (it's free) to access it online.
I know when I found this Health Unlocked support site that I was a bit confused-- I didn't understand that there was a separate foundation website that I needed to join.. pbcfoundation.org.uk
it really has great resources for us PBC folks. Thanks to the foundation for all the hard work.
Heavy legs?
Upper right pain and upper middle back pain
Just diagnosed
