Mentally struggling following diagnosis - PBC Foundation

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Mentally struggling following diagnosis

Dawn118 profile image

Really struggling mentally after diagnosis. I'm 38 with a 2 year old son. I also suffered a miscarriage 2 weeks before diagnosis. Just feeling like my life is over and I won't get to see my son grow up. I think I'm early stages Alp was 260 last blood test and fibroscan was ok I think at 4.4. Started on 750mg urso a few weeks back. I'm scared to death it's not going to work. Would love to hear some positive stories! I'm planning on speaking to my GP as I think I need some help mentally.

22 Replies

Hi Dawn118,

Please, take a deep breath...you aren't alone. I remember when I was first diagnosed feeling like you. I had such anxiety. Actually I haven't been on here in a while but check in periodically. You wrote your post 3 hours ago with no response from anyone yet. I know you want answers "right now" believe me.

Others will post soon I promise.

PBC is different for everyone. Some have symptoms others don't, and we are all at different stages. For the majority of PBCers out there this is a "SLOW" progressive disease. So, there are some PBCers who have lived with this disease for many, many, years. PBC is not a death sentence. Worse case scenario for most of us means surgery and a new liver if that time comes. Sure, it's not appealing but, no surgery is..however, it does mean that life does go on for us. But again, the disease (in most cases) is SLOW going and the medication helps slow progression down even more. There are two medications approved for use, URSO, and if ones don't respond to that, (though most do) there is also Ocaliva. It's been said that PBCers die "with" PBC, not from it. Those are all positive things to think about. I was diagnosed 5 years ago but my doctor says I've probably had it for over 10 years. My Alp was up when I was first diagnosed as well, it's remained the only thing out of wack so far. The rest of my labs are normal. I do though have stage 3 fibrosis but I don't feel bad or sick at all. Tired,...dry eyes,....but that's about it.

Please take it a day at a time ok? Try to eat healthy which is good advice anyway right?...Meaning, don't stress your liver out with alcohol or too much sugar, too much fat, salt, etc. Regular exercise is good too. It takes a bit to wrap your head around the diagnosis...it does. But knowledge is power. Really. The more you understand the disease, the more you can make the needed changes in diet, or lifestyle to combat it and slow it down even more.

Stella

(I'm so sorry about your miscarriage.😞❤)

butterflyEi profile image
butterflyEi in reply to Ktltel

HI Stella, good to see you are doing okay.

Ktltel profile image
Ktltel in reply to butterflyEi

Hello🙋🏻‍♀️

JBH2000 profile image
JBH2000 in reply to Ktltel

Stella, you are so right. I just read your post after replying to Dawn. I had elevated enzymes for almost 10 years before I went on Urso. It’s so nice to have this group. We share the good and not so good! My doctor said exactly what you said - in decades from now I’ll die with PBC, not from it.Jill

Dawn, my kids you were in elementary and middle school when I was diagnosed, but I had the same fears. Sorry you're going through this. Your fibroscan score of 4.4 is great! A person without PBC or other liver disease might expect a score like that. I was diagnosed in 2012, but that was after a year of tests because I was so early stage it wasn't an easy diagnosis. Ten plus years later, I'm still at stage 0-1. My labs are great and my last fibroscan six months ago was 4.2 or 4.4 (can't remember—either way it was ideal). In many of us it is very slow to progress. The one thing I've focused on is getting my inflammation down. I think inflammation drives autoimmune diseases, so if it's reduced or eliminated, then it seems like it would slow the disease progression. I do this with yoga, walking, and I eat an unprocessed autoimmune paleo diet. (For me, food is a huge trigger of inflammation.) I feel overall better now than I have in 30 years (I had an undiagnosed autoimmune thyroid disease for many years too). Hang in there, take care of yourself and your kiddo, and figure out ways to keep your mind occupied with other things. (It took a couple of years for me to quit thinking about PBC 24/7, but now that I see how slowly it's progressing for me, I am much more relaxed.)

What type of infection are you dealing with? Is it pertaining to your liver?

Maybe you meant to reply to someone else? I didn't mention infection....

Just adding to the good advice here. Join the PBC Foundation and get accurate information. Switch off Dr Google. Listen to the advice of your specialist and make any adjustments needed to your lifestyle. PBC can be managed in 2021 and life expectancy is the same for you as anyone else. I am 81 and still enjoying life (with PBC).

Hi Dawn118

I am sorry to read your post, suffering a miscarriage in addition to receiving your diagnosis whilst at a low point hormonally will have been a double blow and it is understandable that you will feel the way you do. Across the different forums on Facebook there are quite a few younger mums who have had their diagnosis for a while, you may find it useful to reach out.

At diagnosis I was confused, not much help out there in those days so I struggled for quite a few years. I then found the PBC Foundation (who are just 25 years old this year) they are the people who host this site on Health Unlocked. The CEO of the PBC Foundation is Collette who had her diagnosis when her children were young, both her boys are now grown men.

As Ktltel has said PBC is different for everyone, for myself I am 16 years since diagnosis but almost certainly had it undiagnosed for about 10 years prior. I try to stay a healthy weight by eating a diet rich in vegetables and pulses, low on red meat which seems to irritate my liver but high in other proteins. I am prescribed Sertraline to help control my itch, Sertraline is an antidepressant so I have benefitted from the lift to my mood as well.

The URSO you are taking will be prescribed relative to your weight, the recommendations are 13-15mg per kilo. For instance I am 70 kilos and take 1000mg each day. There is a chart in the patient information leaflet which will give you guidance. I believe that your ALP is a good result. It is worthwhile keeping a record of your blood test results so that over the years you can see a good pattern.

I would stongly recommend contacting the PBC Foundation (free to join but donations always help them to keep going). They have an app which is a useful tool, their web site contains up to date information on the Guidelines for the treatment of PBC and other leaflets for the newly diagnosed. Sometimes it is easier to have something you can look at in bite size chunks and the leaflet for new patients is most useful. There is a newly written book by Professor David Jones, PBC: The Definitive Guide for Patients with Primary Biliary Cholangitis. I downloaded mine onto my tablet from the Amazon Kindle but I think having it in book form means that you can dip in and out easily. During the lockdowns of the pandemic the PBC Foundation held weekly Q&A sessions with specialists on Facebook Live. Although these sessions are no longer weekly it is worth keeping an eye on the web site for the next live session as there are always answers to questions of interest and you can send in your questions in advance by email or ask them on the day.

Your idea to chat further with the GP is a good idea but if you need some early input do telephone the PBC Foundation their help line is always open.

I hope the above is of some help to you.

best wishes

Hi Dawn 118, Life can be such crap at times. I’m sorry to hear you’ve had a miscarriage, this in itself can make you feel low and I think it would be best to talk to the GP to see what they can do to help.

As for the diagnosis, it sounds as though it has been found early and hopefully you will respond to the urso tablets.

I got diagnosed by having regular blood tests, didn’t have any symptoms went to the gastro consutltant who put me on 750mg urso. 6 yrs on, still no symptoms, ( have itchy skin but that could be caused by other conditions and manageable) bloods are always within range. I did ask once, if my bloods are ok do I still have to take urso? Got told that’s why my PBC is under control and I will have to take them for ever. I guess small price to keep me well.

Give yourself time to get your head around all what’s happened, talk to the GP and the forum is here to vent if you need to. X

Dear Dawn, I'm so sorry you've had to go through a miscarriage at the same time as the PBC diagnosis. It can feel overwhelming. Between the preliminary diagnosis I had and the formal diagnosis from the liver specialist my Mum died suddenly, so I really sympathise.

For me that was one year ago and I am much less worried now about the PBC as I have gained more information about it over time. The PBC Foundation are a good source of information and I joined them recently. I have found taking good care of myself to be the best approach. I started doing a form of yoga called yin yoga, or restorative yoga, earlier in the year and that has really helped a lot. I try to include some activities every week I really enjoy and that take me out of myself. I do photography which I really love and I forget about everything else as I'm so completely absorbed in it. I think that really helps in calming down the nervous system and reducing inflammation.

After a year I am no worse and probably actually better than I was then. I'm actually taking better care of myself. So I hope that gives some encouragement that things can even improve and not get worse. My response to the Urso has been a little wobbly so it is generally working but I've had a few liver readings go out again. But interestingly they have corresponded with stressful events during the year and my last readings were good so still just on the Urso without additional meds. I feel reasonably confident things will stabilise going forward.

I've starting seeing a psychologist as well and that also helps. I organised a mental health care plan with my GP which means the psychology sessions are discounted. I'm in Australia but there may be a similar scheme in the UK. It's important to reach out and ask for help if you feel you need it (I'm only really just learning to do this more for myself). There are people there who can provide support, and people here on this forum as well. Take care 💕

Hello Dawn,

I am incredibly sorry for your loss. Miscarriage alone is enough grief to bear without the uncertainty that comes with a diagnosis like PBC.

It sounds like you are in early stages. That’s wonderful. I’m glad that they caught it early.

I was very much like you, in a deep, dark place except that I had a newborn, 4 older kids and I’m already in early cirrhosis. My newborn is now 4.5 and… I am okay. I am sick. I am tired. I still struggle mentally but I’m also here, wrapping up this little boy in a big soft towel after a bath, snuggled up reading bedtime stories, planting an ever failing garden, driving my dream car, seeing my oldest kid off the college… I’m still here.

Dawn, I have been where you are. I know it is scary. I’m still scared but… I am living.

What helps?

Therapy. I made my first appointment as “end of life” therapy. I was preparing to die. It helped though.

Find people who get you, who help you. Cut out people who don’t. My husband is amazing. When I get in a dark place is there, pulling me out, pushing me to go see a counselor, dragging me to the beach or around the block.

Exercise. Yoga is for everyone. Go for a walk. Take that 2 year old to the park and push them on the swings, catch them at the bottom of the slide… Try some Tai Chi. Beautiful, gentle motion when you are hurting..

Eat better. Wherever you are.. just do better.

Anyway… find your peace. It is hard but it is worth it. I spent so many days dying instead of living, if that makes sense, and I got nothing from it. Live your life. I know it is scary. I’m still scared but I’m scared with a husband who loves me, kids who need me, a fluffy Pomeranian who always, always needs to go outside to potty one more time, a cat who just knocked a glass off the counter… my life is still here, needing me if I’m scared, depressed, sick or not.

I hope something I said is useful. You are not alone. Stick around. There’s a lot of wonderful people here and stay away from Dr Google. Stay strong.

Hi Dawn It does seem overwhelming at first but it does get easier to accept. Urso does seem to keep levels steady for most and I have also been given Bezefibrate as second line. Not sure how but within 6 weeks All my levels and blood work returned to normal! I was classed as non responder to urso but still take it, with Beze and this seems to work for me - at least for the moment. I have had PBC now for 5 years and it no longer consumes my every waking thought..just got to get on with it. There are worse things out there it seems to me. Your scan is brilliant and honestly you will get through this .. 😊

Hi I was diagnosed 12 years ago at 50 years old. I remember my gastroenterologist telling me the majority of people die with PBC not from it. I have no symptoms just a positive ANA and elevated Alk Phos. I have had 2 fibroscans which show no scarring.

I have been on 500 mg of Urso since my dx. I have no side effects except for thinning hair.

My Alk Phos always tests high but does fluctuate.

The internet can be scary so please get your info from reliable sources.

I did establish with a hepotologist . Recently he told me that I have done so well that he anticipates that I will continue to do so.

I’m sorry about your miscarriage.

Know that there are plenty of us out there that do well with this condition.

Good luck to you. Enjoy your little one!

Hi Dawn118. My alt and ast were very high for a while. I have PBC and GCA. Urso has been great for me. My liver results are now pretty stable. It is very worrying when you learn that your liver results are not normal. However, it is likely that with the correct treatment, you will lead a pretty normal life. I wish you well. Keep us updated on your progress.

Hi Dawn118 don't worry so much. The Urso will most likely work it has for me I've been diagnosed for 3 years now and my 'numbers' came back to normal once I was on Urso. Also it is natural to feel anxiety and I'm so sorry this came on top of a miscarriage. But this does't mean you can't have children and live a good and positive life. Focus on the positives where you can. You have been diagnosed before it has progressed to liver failure, which is how it used to be. There are many others who have travelled this path before you including mothers like you. Don't search on the internet as you will find more negative stories rather than the reality. If you aren't a responder to URSO there are alternates as Ktltel has advised. Join the PBC foundation which is based in the UK and provides another support network. You are not alone in this, even though it is an unusual condition. The main thing is to look after yourself and your loved ones in the best way for you. Each of us is individual and chooses what we do. I've chosen to totally give up alcohol and also gluten, dairy and sugar (mostly). I exercise regularly at the moment with a daily walk and yoga a few times a week as well as play squash. I count my blessings. My main symptom is tiredness which is why I got the diagnosis in the first place. I adjust my working life accordingly. But I'll let you in on a little secret. In many ways I am looking healthier than I ever have for years and I'm older than you with grown up children. Best wishes on your journey, in joining this club that you'd rather not be a member of. Welcome and best wishes for your journey with PBC.

To echo what others have said, you are likely to die with PBC, not from it. I take 500 mg of urso twice daily and my alp is right at the upper limit of normal. To control inflammation, I eat a plant-based diet. I find that eating meat or dairy, especially, always throws my blood tests off. I also drink 3 cups of coffee a day and I believe it helps my liver (scientists agree though some doctors are on the fence about this). I know it must be hard to relax right now, since you are new to your journey and you have suffered a miscarriage. The best advice, then, is to be your own best friend. Forgive yourself for not being "perfect". When you're tired and grumpy, forgive yourself. When you need to just laze around the house, do that. When you need to cry, do that. Time heals. Moreover, you liver is a great self-healer if you just give it the food it needs and don't drink alcohol or eat inflammatory foods such as sugar or animal fats. In a year, you will be a pro at this and giving others advice!

One last thing. Many people underestimate the importance of regular bowel movements (apologies if the topic seems indelicate). Your liver needs you to void your bowels regularly to help it to reduce the levels of ammonia and other toxins. Going regularly will help to reduce the inflammation your liver has to deal with and lower the "body burden of chemicals" that may be partially behind the worldwide increase in autoimmune disease:

collectivewizdom.com/BowelM...

Hi Dawn - YOU ARE NOT ALONE! I just got diagnosed a year ago after watching enzymes bounce around for 10 years. I’m on Urso - tough drug - but it works. You will see you little one grow up! This IS NOT A DEATH SENTENCE. No one wants to have any disease, but this is extremely treatable with medication. You may feel fatigued at times, but do some exercise and eat well (which is really hard - because I love food, but you are what you eat!!!). I react very poorly to meds, so the Urso gives me diarrhea.I am also older than you - in my 50’s - but young looking and young at heart. Please reach out to me anytime. I have 2 teenagers- I’m not going anywhere. Urso has regulated my enzymes- I’m all good. It’s scary in the beginning- but this forum is here got you to share your feelings - good and bad. I’m here anytime you need me.

Jill

Hi Dawn - I also want to add that I live an hour outside Manhattan- snd went to one of the top liver specialists in the world at Mt Sinai. She was wonderful (I also have sarcoidosis- which is another autoimmune disease). She did not dwell on the PBC at all. Take your meds- get your blood work checked (I go every 3 months), and live a happy life.Post Script: so sorry about your miscarriage. Hopefully try again snd you’ll have another wonderful child / that will sure keep you busy!!!!

Jill

Hi dawn i felt like that 4 years ago when i was diagnosed.on urso 4 yrs 1000 mg a day.i am a responder.my alp is still over 200 but my hep told me thats ok with pbc.you will be fine.its just a shock when we get the diagnosis but you will get used to itI get bloods done every 6 months and i see my hep once a year.my fibroscsn is normal.i stopped worrying about it.

Hi DawnSo sorry for your loss. Miscarriage is tough and dealing with that alone is a challenge. I was diagnosed in June of this yearr my world fell apart. We had just bought a house that was and still is a building project. I am stage 4 FibroScan score of 14, consultant thinks i have had this for over 10 years, my ALP was 758! Urso for 3 months and ALP down to 268 my Bilirubin is still high end of normal but coming down. Like you I am terrified, but being told your Liver is like a second hand car, dented but functioning made me smile. I try to take care of myself now.

Now work part time after years of burning the candle at both ends pulling 18 hour days and thinking I was super women PBC has forced me to slow down and enjoy the simple things, i was often too busy working to enjoy my children growing up so enjoy yours, i am lucky to have another chance with grandchildren, i fully intend to see them grow up and have kids of their own. I walk 40 minutes a day and visit the gym 3 times a week. I am now a vegetarian moving slowly to vegan ( can't give up cheese) I am finding it hard to stop and slow down but getting there. Take care of yourself, join the PBC Foundation they are amazing.

Thank you for all the kind comments and stories. I think it's going to be a road to recovery mentally. It's good to hear that people are living and not in fear.

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