CF related liver disease - looking for advice/support
I have cirrhosis due to my CF and my liver is being closely monitored. My alkaline phosphatase levels are always elevated, but my bilirubin has been okay. (The weird part is that my bilirubin was apparently ok the whole time my liver disease was progressing to cirrhosis. The only difference in my labs was the elevated alk phos. This led to my cirrhosis being discovered way later than it should have been).
Recently, my alk phos randomly spiked to over 2,000. My doctors seem really confused, especially since bilirubin is still okay. They think it could possibly be caused by gallstones so I'm getting checked for them, but I am not really having symptoms of gallstones. What's really concerning me is that my liver doctor said that based on my bloodwork, the alk phos is coming from both my liver and my bones. She kind of explained what this means, asked if I have bone pain (I do), and suggested I tell my pain management doctor about the elevated alk phos coming from the bone.
I am going to do this when I see her next month, but I'm feeling so nervous about everything. Possibly the biggest obstacle I've faced my whole life is my joint pain and general aching all over. I've been evaluated for arthritis because my joints ache and swell but I don't have any. For some reason, there is damage to my knee joints, enough that I now have baker's cysts in both of them, which really hurt. But still no evidence of arthritis, no one knows what caused the cysts. I have osteopenia as well, but they tell me this should not be causing any pain. I just don't know what to do anymore or how to get help for this pain, and now I'm worried it has something to do with this elevated alkaline phosphatase level.
I guess what I'm wondering is, has anyone else experienced something like this? Elevated alkaline phosphatase due to liver disease, but it's also coming from the bone?
I'm hopeful pain management can explain more to me, and maybe then I will feel better, but in the meantime I'm just trying to find anyone else who has gone through this, because it feels so isolating. Thanks
I am so sorry you are going through all this. Liver problems do often come along with cystic fibrosis. I hope your upcoming visit to the pain doctor helps you find some answers. All the best, Kathy (Team member) Also sorry to hear you are going thru all of this. And, as I type, my hands hurt. I have horrific arthritis and it gets worse as the weather cools. I can now predict the weather just like my grandmother did! I really like hot showers when it gets cold outside.
I wonder - are you on modulators (Trikafta, etc...)? If so, have your doctors considered reducing or discontinuing in light of the liver issues? Trikafta puts a damper on just how much can be done about pain as far as medications, but you can always try massage, low impact exercise and topical creams and ointments. Also, hopefully they may be able to do a pain block.
My heart goes out to you regarding pain. I have a good day followed by 2 bad days and so on. I try to make the best out of the good days. I wish we had better options for management, and our doctors understood a bit more about it.
