Anyone else?

Hello,

Has anyone else out there been diagnosed with PBC and "unable" to take/tolerate URSO? I'm wondering about the rate of progression with the disease and not taking medication. Also, is it possible to have elavated PBC markers showing up in our blood work and the disease never actually manifesting itself into stage one PBC? (This is including the AMA M2 enzyme.)

Someone posted on here a while back that it was possible to have elevated LFT and never develop PBC. But I can't find that "reply" post now.

Thanks,

Stella

Dx PBC 10/10/16

Can't tolerate URSO, Elevated LFT's including AMA M2, Biopsy and Ducts insignificant, however mild fatty liver found.

34 Replies

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  • Hi Stella, I was diagnosed early 2015, allergic to urso. Thought to have had pbc for approx 8 years, scan was normal. So far no major symptoms,just little things like darker skin patches, slow healing of cuts, and very tired sometimes, although this could be side effects of meds following a heart attack. Elevated lft doesn't necessarily mean pbc, but gp would probably investigate with more blood tests. Maybe some kind of meds might cause this among other things.Have you been diagnosed with pbc?

  • Hi Emerich,

    Yes, I was diagnosed 10/10/16. Have elevated LFT's including positive AMA M2 enzyme. However, Dec. 1st ERCP and biopsy only revealed fatty liver. (For now)

    How did they figure you've had PBC for 8 years???

  • 8 years earlier I had a badly infected gallbladder and gallstones. After they were removed my blood tests were raised but after they started getting back down it was assumed they'd return to normal levels . I didn't give it another thought and didn't visit my gp again until I had a heart attack in 2014. Gastroenterologist said he's fairly certain that's when pbc started. Levels at time of heart attack were similar to those of 2014. Then more tests confirmed pbc.

  • Emerich,

    Thanks for quick reply. It's 8:30 pm here. (U. S.) You're up late. 😊

    I see a hepatologist for the first time Feb. 2. I have a few questions for him. I'm stressing out because I can't take URSO. Trying my best to keep PBC at bay with diet and supplementation. I also just started LDN. low Dose Naltrexone.

    So you haven't been staged?

  • Yeah it's 2.30 am here.don't sleep that well. I haven't been staged with biopsy but gastroenterologists says I'm probably stage 1 as my levels have been much the same for the last 2 years, apart from serious spikes as reaction to heart meds. I've had to stop statins because of it. I just have annual checks for now ,but he said to contact him if I think I have any symptoms. I'm good for now but feel happier if I could take the urso and statins.Do you have any symptoms?

  • Mostly just fatigue. But I'm over weight. I figured that's why I was tired. Carrying around extra pounds. I had a bad bout of gastritis last Sept. Blood work in Oct. That's when they found elevated LFT's and diagnosed me with PBC. Started on URSO and got SUPER sick. Took me off of it 3 weeks later. (That was a fun 3 weeks! NOT!) All of November stayed weak and Sickly, then in Dec. had the ercp scan and biopsy. Biopsy came back negative for PBC and my bile ducts looked "unremarkable" they said. So, here I am. PBC positive according to blood work, but nothing (as far as biopsy this past Dec.) showing damage to bile ducts or Liver. I do have mild fatty liver. Been on strict diet since Sept. I've lost 60 lbs. I've developed anxiety issues...

    You survived a heart attack! Why is it you can't take statins? Will a good diet help with heart issues?

  • That's good that you don't have it. A lot of stress for you, anxiety issues understandable.

    Luckily I had no lasting heart damage after the heart attack. Blood tests showed very high lft results and after more tests they found pbc, with bloods worsening every time. I felt ill and exhausted but assumed it was the heart attack. Eventually gp took me off statins to see if it would improve lft results,and it did. He tried me on smallest dosage of statins again but lft result shot up so I'm classed as allergic to them. With the urso I was fine for the first 7 days then woke up covered in blister like rash,swollen eyes and lips and really low blood pressure, 65/36 so...allergic to that too.

    Heart attack came out of nowhere! So shocked. My dad died of it at 48 . Apart from gallbladder I'd always been healthy,visits to my gp could be counted on 1 hand. Changed days ! Doing fine for now though.😊

    Wow 60 pounds in 3 months! That's so good. I want to lose about 1and 1/2 stone, but not doing very well at it. Can shift 3 to 4 pounds then it sneaks back on when I'm not looking 😁. We have an allotment so hoping once the weather gets better that'll help.

    Hopeyou're feeling good today.x

  • Thank you. Hoping you have a good day too. Lots of huge changes for you too so quickly in a short period of time. It takes emotional adjustment for sure. Your not alone.

  • I too can't take urso, much to my gastrologists apparent annoyance - like you I had three weeks of being super sick, till I couldn't take it anymore and took myself off it! I have been diagnosed with PBC and AIH, and I struggle each day with exhaustion. I don't sleep much either, and tbh it's getting me down. Contemplating trying the steroid route, just to feel better and start to have a 'normal' life? Glad it's not just me who can't tolerate that URSO stuff!

  • annieco, when we're you diagnosed? Did they stage you? Did anyone mention how fast PBC progresses without URSO? I'm sure everyone is different. How are you feeling?

  • My liver numbers have been deranged for around three years plus, probably since I had my gallbladder removed when I was told I had a growth in it - but when they'd removed it no lump was found?? Diagnosed with AIH and PBC six months ago after trans jugular liver biopsy. I haven't been told about staging - all I know is my life has crumbled, I don't work anymore, go out or have a life. A bit fed up tbh.... but as I always say, there's always somebody worse off x

  • annieco,

    That doesn't make what your going through any less important. It has turned my life around too. Please hang in there. Have you heard of Low dose Naltrexone. I just started tee taking it. It will be a few more weeks before I know if it will help me feel better. It's helping a lot of people with many autoimmune diseases.

  • Hi, no I've not heard of naltrexone, just had a peek on Google and it says it's for people on opioids and alcoholics? I'll try anything to get my life back, just nervous of the steroids and immunosuppression meds, I'm not skinny to begin with and I don't want to get any rounder!

  • That's regular Naltrexone your reading about. "Low Dose" naltrexone, or LDN as it's known acts as a whole different drug. Google LDN foundation.

  • Haha, sorry, I'll look it up properly!! is there also suggestion of taking vitamins may help too? Will u keep me updated on how u get on with it, esp if it helps with fatigue?

  • annieco, Better yet google

    Lowdosenaltrexone.org

    All one word.

    Lots of info. there. I'll keep you posted. I'm also taking a supplement for adrenal support, and my wellness doctor gives me testosterone shots every 2 weeks. I was super low. I've only had 2 total. I have some energy for the day, but I also have anxiety I'm dealing with. Not a lot. But enough. Where are you from?

  • UK, Lincolnshire, where are u? I too have anxiety and depression, asthma and eczema! I just want a bit of energy, I'm only 50. Wats a wellness Dr?

  • I'm is Kansas, U. S., wow, you are only 50. I'm 58 in May. Please read the info on LDN. I think it can help you.

    A Wellness doctor is an M. D. "and" practices functional medicine too. Like, vitamins, exercise, eating right, and supplements.

  • Will do, I'll mention it to my gastrologist next time I see him - don't think we have wellness doctors over here! Thank you for your advice :-)

  • Great, Just know that most main stream physicians don't always agree with naturopaths or wellness doctors. Naltrexone is FDA approved at the 50mg level. "Low dose" naltrexone is not. It must be prescribed by an MD and compounded by a reputable compounding pharmacy to the 1.5 to 4.5 mg capsules. Check out the site. It explains everything. I promise it's worth looking into. Have a good night.

    Stella

  • Hi cannot take Urso, had an MRI showed up thinning of bible duct, then had ERCP to check for the big C, came back benign🙏🏻. Been off Urso for 18 months. Diag. 2013, seeing consultant every 6mths. now instead of yearly.😊

  • Highwood, how are you feeling today? How long we're you on URSO before they took you off?

  • Hi Ktltel, I was on Urso on and off for about 18months, sorry only just seen your message. I am feeling ok just suffer from fatigue a lot, not so many upper right quadrant pains. Hope you are feeling well. 😊

  • Hi Ktltel,

    You asked about the rate of progression of PBC without medication - I'm sure you are aware that as we are all different the rate of progression is also different - here is a link to the Pbcers.org's "PBC Stages" - there is a section on the natural progression of PBC without therapy.

    pbcers.org/about-pbc/stages/

  • DianneS

    Are these numbers without taking URSO medication?

  • Thank you DianneS. I see now. How I wish I could take URSO. The information was just what I was looking for.

    Stella

  • Happy to help. ;-)

    Now, I'm a member of a couple of Facebook PBC support groups, and I know some of them are non-responders to Urso - I know you can not take it due to an allergic reaction - their doctors have them on other drugs (in most of these cases the PBCers are taking these other drugs in conjunction with Urso). I will send a message to one of them and ask which drug she is taking - you may be able to discuss the possibility of taking something else instead of Urso with your specialist - anyway I'll get back to you with the name of the drug.

    Di

  • Thank you. ❤

  • Hi Stella,

    I received a reply from the lady I was speaking about and she has given me permission to 'copy and paste' her reply here:

    "Hi Dianne, I take Lipidil which generically is known as a Fenofibrate. Getting the dosage right was my biggest challenge initially and it did take a couple of years before my numbers went back to normal. But I also still take the Urso. The Lipidil was added to my regimen once I reached Stage 4. My Hepatologist told me that she was not sure whether it was the combination of the Urso with the Lipidil, or the Lipidil alone that brought down my numbers. So I am still taking the Urso. My Hepatologist does not want me to stop the Urso because if it's the combo of the Urso AND Lipidil that's working in my case, discontinuing the Urso could set me back and they don't want to take that chance. I have to say though that I know someone else with PBC who switched to Lipidil because she was also a non responder to Urso and in her case, the Lipidil put her into liver failure, which I've read can happen with this drug. So I guess it does have its down side. Luckily for me, I'm still doing well on it four years later. Best of luck to your friend."

    As you can see there are pros and cons for this medication (as there is with most medications) so you would really need to talk to your doctor about alternatives.

    Good luck

    Di

  • Wow.... No grey area. That's pretty scary. We will see what my hepatologist has to say in February. Thank you so much!

    Stella

  • No, no "grey area" - I don't own any 'rose coloured glasses' so really appreciated it when I finally found doctors who don't 'sugar-coat' things. My current Hep. specialist was the best, sadly he is returning to England (well he just left for England last Thursday) so I'm hoping the Hep. specialist he recommended will be just as straight with me.

    Again, good luck with finding an alternative to Urso.

    Di

  • Thank you!

    Stella

  • My itching has severely got worse if it could !! Since starting Urso !

    Started it 5 weeks ago and my ALP has come down from 1007 to 574

    So I'm having to try and tolerate it

  • Hi Ktltel, I seem to be like you and wondering same thing. My reaction to urso has been awful. I'm just kind of doing a liver cleanse and then have labs done again.

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