As well as PBC I have fibromyalgia and complex PTSD. I’ve also been experiencing some major and unusual anxiety and depression in perimenopause, different from prior experiences of anxiety and depression. I saw a new GP today and he was suggesting medicinal cannabis which has been found to help many with fibromyalgia and PTSD. Obviously a concern I have is how it may affect the liver. I’ve read that it is currently being looked into as there is increasing evidence the endocannabinoid system is very relevant in liver diseases. There is still much research to be done in this area.
What I’m wondering is whether anyone has experience with medicinal cannabis and how did they find their liver readings went with it? This is obviously something to run past my liver specialist too.
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Turquoise2075
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I am actually going to my own hepatologist appt this morning. I can ask him his opinion and let you know. I do know many of the members of my other support group did use it successfully.
Thank you very much Donna. I am looking for further research on it and I will be asking my liver specialist about it. I was a non-responder to Urso but my liver readings came down and normalised after advanced micriobiome testing and supplements that targeted key areas related to PBC and the gut dysbiosis that was found. This was actually done by a naturopath but one who is strongly evidence based and actually works in a gastroenterology clinic with my liver specialist. I then had a return of cognitive symptoms and fatigue while my liver readings remained normal. I was put on obeticholic acid instead of Urso and the fatigue and cognitive issues improved a lot from 3 weeks after starting it. The liver specialist said it helps to restore the blood-brain barrier. So I’m not sure how medicinal cannabis would fit in the scheme of things but my liver readings have at least been good for some time now. I basically don’t want to do anything that will compromise my liver. I hope you have a good visit with your hepatologist today.
I had a very postive visit with him today. Labs were good and he was pleased. He did say he thought it would be fine to try the cannabis. Like you said, always check with your own doctor as he is familiar with your medical history. Let us know if you use it and how it helps or not. When I was in Edinburgh last year for The International PBC Summit, one of the pharmacueticals was working a theory that PBC may possibly be a blood-brain barrier miscommuncation. When I go again in early April, I hope to learn more about this research. I will let the group know. So glad the obeticholic acid helped your symptoms. That is a huge deal!!!!
Thank you so much Donna 🙏 I really appreciate that. I’m really glad you had a good visit with him.
It’s very interesting about the blood-brain barrier. It feels significant in my case as very unusual altered cognitive states have arisen since my PBC diagnosis. I’ve had difficulty with being disoriented and losing the ability to do even basic tasks at times. Those states are often combined with feeling very unwell and debilitating fatigue. The obeticholic acid noticeably improved the cognitive function of mice in research studies and it seems to have helped my brain too!
I will let you know if I start the medicinal cannabis and how I go with it.
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