I hope you are feeling better. I have been solo on my PBC journey because I didn't know support groups like this existed. My Alk remains around 300, even on Ocaliva. I do get liver pain and nausea. Did you go to the ER because of your pain or other reasons. I was under the impression that there was nothing the ER could do to help someone with PBC. Of course I am learning more and more on this site each day. I once went in with dehydration and they gave me some IV fluids. Would you care to share regarding PBC how the ER can help? Sometimes I think I would really like to go to the ER, but didn't think anyone would be familiar with PBC to help.
When I was there I was told that all they will do is take me out of pain and run test.
The Dr asked if I still had my gal bladder. I told him I had all my organs and that I'm newly diagnosed. I declined the morphine injection. He said the ct scan showed a lot of bile built up in the liver area. I go to the bathroom regularly. But he said that it was up higher pressing into my liver area. He had a very strong Russian accent and it was hard for me to understand him I got my medical records from him and will call my Mayo dr in the morning. I'm in a lot of pain now. Hopefully I can get it straightened out and my enzymes back to normal. I don't feel constipated and I go normally. Especially since I started Urso and the other medication. I won't go to ER again because all they want to do is imaging blood work and drugs. I have to keep drugs out of my liver.
I am really sorry to hear this. I would most definitely follow up with Mayo. I was hopeful the ER would be more helpful. I haven't gone in to the ER for anything PBC related because I am pretty sure unless it was life threatening like a bleed or turning jaundice, I would think they would just ask me to follow up with my GI doc. I a supply of anti- nausea medication. I may go in for IV fluids if I get dehydrated, or be tested for infection. I guess I was hoping that ER docks had something now days for PBC flare up relief.
My enzymes can easily elevate that high. I just got them back to normal range and they are going back up again. I have autoimmune hepatitis with Pbc. I don't know what it means to have aih with Pbc. I was just diagnosed but I know that Pbc attacks my bile ducts and aih attacks my liver. For now the Ct scan and ultrasound showed no bile duct damage
Well that's pretty scary. When can you see the doctor at the Mayo clinic. I'm sorry to see you are in so much pain. On a good note, if you hadn't noticed the pain you wouldn't have been diagnosed as soon. Maybe it's a blessing. Keep us posted.
I had no pain at diagnosis. All my pain started with prednisone/steroids and the immune supressent drug. My next apt at the Mayo Clinic is July 26. I can't wait till them. My enzymes will spike. They are already starting too
The luxury with the Mayo Clinic is that you can email yur doctor and they get back to you fast. My husband emailed him this morning and forwarded my labs and scan results. Mayo gets back pretty fast.
New England01 you and several others are saying this. But I have only been on the supressent for 7 almost 8 weeks. My Dr said that it takes 8 weeks to get the full affects of the drug
Im so sry that you're hurting to that extreme. That's basically all the ER can do unfortunately. The last time I was in the ER for the pain was in April. Im allergic to morphine so they gave me a pain med through iv called dillodid. Yes, it's a pain medication, but at some point you have to give up in order to have some relief. But, in my case, Im already at stage 4 with cirrhosis, there's no coming back from that. So I feel that if Im hurting too this extreme, why not get a little relief with the pain medication. My heptologist just okayed a script of Percocet, which my family Dr has filled for me. I do not take it often, just when I cannot take the pain any longer. Oh, I also was recently told that I could have fibromyalgia by my neurologist. Isn't our ALK Phos always going to be a little out of wack because of the PBC? Mine has never been "in range" but they stay around the 300's. I feel that it's much better than in the 2000's which is where I was at when they diagnosed me.
You are in way more pain than me. I'm sure of it. I. Feeling better today. I'm going to take my meds soon and see if my meds is causing my pain. I can tolerate a lot. I hope yur feeling good today my friend
Since I've been placed on Elavil, I seem to be doing much better. It's actually the generic form called Amitriptylin 25mg for the first two weeks then I up the dose to 50mg if Im not getting more relief. It's actually a antidepressant but is used to help with Neuro pain & fibromyalgia pain. I believe it is working because I can actually get out of bed & not feel like I've been beat from head to toe. I still have a ways to go, but this is a great start. Praying you get some relief soon as well.
The problem is that having fibro and pbc stage 4 you never quite know what is what..,.I have had bad lower back now for years but it is really bad at present and hard to sit so is that PBC or fibro...no-one knows. Re consultants, here in the UK it is so busy my appointment has been changed three times..if my GP hadnt arranged blood tests and I hadnt insisted on an endoscopy via consultants secretary to see if my varices might bleed again and check all is well, I wouldnt know where I was. As it is the ultra sound I am meant to have regularly is two months late.... means you are very on your own.
I have only 5mg of amitryptiline ! And allowed only two codeine at 15mg a day but which means I still need a laxative as its important not to keep ammonia inside you with stage 4 which is cirrhosis. .
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Alk-phos climbing up... 😔
any pbc ers from Australia on here as I have googled and they keep referring me back to here
10 day difference in labs before and after pain medication
Just beginning the confirmation and staging of my PBC diagnosis.
Pbc suspected but no urso if normal liver biochemistry
