I recently was diagnosed with PBC and went to see a GI doctor who recommended I start taking URSO. My bloodwork shows an elevated alk phos level (over time), positive AMA, GGT, DSDNA and I also was recently diagnosed last year with an MPN (myeloproliferative neoplasm) called essential thrombocythemia (which is a form of blood cancer as well as a gene mutation called JAK2 v617f). I am currently taking medication to lower my platelets which were extremely high when I finally got to see the oncologist, however, my liver enzymes remain elevated and so I was referred to a rheumatologist as all my lab work at the time suggested I had lupus but my rheumy said I wasnt showing any signs/symptoms of lupus and she did some additional bloodwork and thats when I found out I was AMA positive. Was referred to the GI doctor who said I most likely have PBC however otherthan my liver enzymes being elevated and a positive AMA, I do not have any PBC symptoms so I am feeling a bit overwhelmed taking another medication on top of the current ones I already am taking for my blood cancer and unsure which direction to take. The GI doctor said its difficult to know which might have came first (the mpn or pbc) either way its hard for me to justify taking another expensive drug based solely upon my lab work and no symptoms. IDK...
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Toddyboo
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Hi! I facilitate this support group. You surely have a lot going on in your life. With a +AMA test and elevated liver enzymes, that is in most cases sufficient for a diagnosis of PBC. If possible, be seen by a hepatologist. Most GI and PCP docs aren't really familiar with PBC. You should be taking Urso.It is a proven first line treatment for PBC. Many people don't experience symptoms at all. We all have PBC differently. Neither symptoms nor lab results changes the dose of Urso. It is always based only on your weight (13-15mgs/kg) I strongly recommend that you join The PBC Foundation if you haven't aleady. They have so much information. It free to join. pbcfoundation.org.uk Take a breath. It's ok. It's important to get the care you need and blood work repeated every 3-6 months. Where do you live? Take one day at a time. Reach out anytime with any questions. Having your liver enzymes checked regularly gives you peace of mind that the Urso is doing it's job keeping your bile ducts and liver functioning as well as they possiby can.
Thank you for your support. I appreciate it I currently do not have a hematologist but I feel confident that the GI dr I recently met with is following SOP when it comes to PBC, although he did mention he does not see many patients with PBC. I am still on the fence about the medication but I have done a lot of research about PBC in general and I seen that URSO is one of the primary medications prescribed for PBC. I also read that while most people respond to the medication, not all people respond to it, and they may have to try other medications. (but there's not many medications to choose from). I have some additional tests coming up this week and will most likely be connecting with the GI doctor soon.
I appreciate your honesty in making this decision. There is no way to know, however, if we will respond favorably to any medication that is prescribed for us - for any reason. I do know that it is proven to be the first line of treatment. About 60-70% of those who take Urso are responders. Not taking it means there is nothing helping to maintain liver and bile duct function. It has given so many of us years of life we would definitely not have had. We are fortunate to have this drug available. It has been a God send for so many who otherwise would not have done well in slowing the disease. With lab work being done every 3-6 months it is easy to see if the liver function ( your numbers) is improving. It may take up to a year to see if you are a responder, but I can assure you that without Urso the PBC will progress unchecked. We are all here in this together. All of us have had health decisions to make we never thought we would have. Use the science that has been proven to help. It is scary, I know. I've been there too - right where you are now.
I don't know if this will help, but I've been taking generic Urso for almost 30 years with no side effects. I also never had symptoms except for a brief period of itching after the generic was changed to another company (and stopped with another change). My ALP and other closely related liver enzymes never went completely to normal until I added Fenofibrate about 3 years ago. I strongly believe that Urso has saved me from the 'death or transplant in 10 years' that was my original diagnosis. Good luck!
I couldn't agree with you more. I started taking Urso some 40+ years ago with no ill effects. Although I did need a transplant some 20 years after my diagnosis, I have continued taking Urso for the 19 years since as well. It surely 'saves' us in many ways.
I was diagnosed in 2006/7 and was prescribed URSOdeoxycholic Acid. I did not have any symptoms until 2014. As DonnaBoll suggests seeing a hepatologist may give you the guidance you need. It is tough when you already have so much going on. best wishes
I was diagnosed with PBC back in 2017 with absolutely no symptoms whatsoever.
My bloods were checked yearly as the disease progresses very slowly over time. Last Oct my LFT were sky high, I had no symptoms but I was advised to start Urso. Like you, I was reluctant. But I’ve had no side effects and 6 months later my LFT have dropped to near normal.
It’s a lot to take in, especially as you have so much else going on.
Taking Urso will hopefully stop any of the side effects that come with PBC, which can only be a good thing.
Definitely join the PBC foundation for some support, it’s a great community. All the best.
Welcome. Yes it can be overwhelming. Has GI scheduled a liver biopsy or any imaging to learn the stage of your disease?
Urso is our saving grace. It’s the only thing that will slow the progression of PBC. It’s important that you get the medicine and take it as directed. The dosage is based on your weight. You’ll be on it the rest of your life. We all will be. I take 1000ng per day
If your GI doesn’t have a lot if experience with PBC , you might want to look for a hepatologist. Consider yourself very luck that you don’t have any of the symptoms. They can be dreadful.
The GI dr I recently seen mentioned the liver biopsy and of course the risks but felt it wasnt necessary as my LFTs have been consistently elevated and I tested positive for AMA which he felt were 2 out of the 3 criteria necessary to diagnose and prescribe me URSO. He ordered some repeat LFTs and some other bloodwork such as a PT and INR along with a Vitamin D test (with the assumption, I am guessing, to see if the URSO he ordered had any effects on my Liver enzymes. but I have not yet started the medication). He also ordered an ultrasound to see if there were any issues related to blood flow getting to my liver( most likely a concern r/t to my mpn). I had an ultrasound a few months back for my MPN which thankfully was normal in relationship to my MPN diagnosis.
My GI doctor ordered an ultrasound of my liver as he wanted to check to see if there were any obstructions or limitations in blood flow to my liver (most likely due to my blood cancer. He suggested I have a liver biopsy but because I met 2 criteria of having a consistent elevated alk phos level for close to a year now and a positive AMA he suggested I start Urso. He ordered me to take 1250 mg per day. My US showed no abnormalities and he did not order any additional scans. Can an US determine the stage of my PBC? or can that be determined by another type of scan or only liver biopsy?
Hi there. You are dealing with a lot, and I hope you can find some support here. (I'm familiar with the ET subtype of MPN as well as the JAK2 V617F mutation). I too was surprised with my PBC diagnosis after mild and sporadic symptoms that I would not have associated with an autoimmune liver disease (some fatigue from time to time; occasional itchiness). I had attributed that to diabetes, which I confirmed I had and which runs in my family. We all present with PBC differently; some have no symptoms at all. I have been on generic Urso since June 2022, and my liver enzymes are now in the normal range. It is important to take it Urso of you have PBC. Are you able to see a hepatologist? Also, the PBC Foundation has a lot of good information. Take care of yourself.
I don’t mind at all. I don’t have ET or MPN, so I can’t offer perspective from a lived experience as a PBCer. My father-in-law was diagnosed with an MPN. I also did some epidemiological research on MPN classification when I was in grad school.
the important thing to remember is urso has low toxicity and taking it is usually with no side affects . It is extremely effective in treating PBC so in a way it is one of your health conditions that you can put aside while you deal with the others. PBC is treatable and usually Urso is the front line treatment. We are extremely fortunate to have this treatment and usually it has meant we can go forward in our lives with p bc running quietly in the background unlike other condition which are confronting on a daily basis
I was diagnosed with PBC a few years ago and put on URSO. The diagnosis was solely based on bloodwork since I too had no symptoms other than I was overweight. I decided to try to loose weight and started with simple changes just cleaning up what I ate and tried to figure out if I was hungry or just eating to eat. I'm down 50 lbs which has made a huge difference in my blood work. Still taking URSO until I see my GI physician later this year.
My suggestion is to take the URSO and see if it makes a difference in your bloodwork after 6 months. Take with you doctor about the high cost of the medication and see if they can assist in providing you samples or part of any programs.
I wish you much success to your journey but remember you're not alone. Those on this site are your support system. It has been for me when I was first diagnosed.
just wan to make sure that loosing 50 lbs ( good for you!) doesn't change your dose of Urso. Check on the Urso calculator I posted earlier today. It is also on The PBC Foundation website and phone app.
It won't hurt to check. You should be so proud of your weight loss. Making those types of changes make a difference mentally as well as physically. Let me know if yiu feel a dose change is needed according to the calculator.
I guess that's where I am having such a hard time...taking medication solely based upon my bloodwork of no symptoms. I just keep envisioning myself taking the medication and having unwanted side effects (nausea, diarrhea, hair loss, etc. since I have actually been feeling good for the most part once I began taking my medications for my MPN. I certainly don't want that to change. I regularly get my LFTs checked now due to my MPN as well as my blood counts as I take medication (oral chemo) for that which also scares me a little to take yet another medication. You made me laugh about your comment as to whether you were eating to just eat of whether you were eating because you were hungry as I certainly can relate to that. Congratulations on meeting your goals of losing weight, it certainly is not a easy thing to do.
Fortunately, I haven't had any side effects from URSO which is why my prescription was reduced a year ago. I totally understand your reasoning for distrust in bloodwork. But without regular bloodwork, my primary physician wouldn't have known to referred me to a GI physician. Then he took additional tests and then referred me to the liver transplant team. This frightened me into taking action right away to loose the weight.
I discussed my concerns with my primary and we made a plan moving forward. I actually wrote down everything I ate, drank, exercise, how I felt, anything that would assist me & her to discuss. She has become a true partner in my health quest. I now feel these tools to combat my journey.
I would have another conversation with you Dr to share your concerns, learn what other options are available without taking the URSO. The important thing is not to give up on yourself. To know you are not alone. Many of us have challenges and this website can provide additional resources. Don't be afraid to request a 2nd opinion even a 3rd. Knowledge is power if used wisely to make the critical decisions you have ahead.
Personally, I have had the year from hell! May 2023, I had a knee replacement which was very planned. Six weeks later, I fell down 6 of my 32 stairs causing my quadricep to rip completely requiring surgery and a 2 night hospital stay. I was in a brace for 4 months and back in PT. December 2023, I had my other knee replaced and while doing my PT at home felt a sharp pain and again tore my quadricep just before Christmas. The good news is did not require surgery because I could still pick up my leg without bending it. But back in a brace for 4 months. I should be out of my brace on 3/10. It's almost here.
I'm sharing this information with you to we do not have any control of our aging bodies. And trust me, mine is aging fast...🤣. I'll be 72 later this year and have realized I need to take better care of my body and appreciate the parts that work while working on the parts that need to be strengthened.
You definitely have had a rough year!!! Sounds like a nightmare going through all of your recent surgeries as well as falling down a flight of 32 stairs!! You are definitely lucky it you didn't sustain a head injury. I am happy to hear you are finally on the mend and I pray that you will continue to move in that direction and I am happy to hear you will finally be getting your brace off on 3/10. I agree with you in the aging fast category It seems like only yesterday that I didnt have any health issues but over the past couple years, I too seem to be falling apart fast, although you have had some major traumas with your recent surgeries and injuries and all. I am sure you have also had a mix of numerous emotions to boot and it sounds like you are doing your best to stay positive which definitely helps with the healing process Thank you so much for your encouraging words as I really appreciate it.
Right now, I am trying to come to grips with starting a new medication for another "rare" and chronic disease since I just went through all of these feelings just recently finding out I have a "rare" blood cancer (essential thrombocythemia) and coming to terms with starting medications for that. (heck the medication label says not to touch the medication when you go to take it and to wear gloves??) I guess I'm lucky I didn't have a worse outcome running around with a platelet count of a million. I had a nurse tell me that maybe what brought me to the doctor to begin with (foot pain I had for close to a year) was a good thing and was meant to be. It definitely makes you have a different perspective on things. I also belong to a support group for my cancer. All I can say is when I start feeling down, I try to remember there are a lot of people in this world who are going through a lot more than I am. Take Care Terry-Lynn. Hope to keep in touch...
I'm sorry you have blood cancer and understand having to glove up just to take the medication is scary. But you are being very pro-active and moving forward. I know you will get this disease where the sun doesn't shine!!! I'm sorry you lives with foot pain for so long. Not fun to be in pain of any sort. But glad you finally went to the doctor.
I too had cancer 6 years ago but they got it all with clear margins. I was lucky and didn't need to have chemo or radiation.
I'm keeping you in my heart and sending you good thoughts for your future.
Stay positive and reach out. We're here for you!!! 😘👍
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I currently do not have a hematologist but I feel confident that the GI dr I recently met with is following SOP when it comes to PBC, although he did mention he does not see many patients with PBC. I am still on the fence about the medication but I have done a lot of research about PBC in general and I seen that URSO is one of the primary medications prescribed for PBC. I also read that while most people respond to the medication, not all people respond to it, and they may have to try other medications. (but there's not many medications to choose from). I have some additional tests coming up this week and will most likely be connecting with the GI doctor soon. 
Confused how pbc diagnosis works?
Confused
ama positive, but normal liver enzymes now. 
Young PBC New Diagnosis
