Newly Diagnosed and Scared: I am a 38 year... - PBC Foundation

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Newly Diagnosed and Scared

I am a 38 year old wife and mother of 3 that has been recently diagnosed with PBC after abnormal LFT's over the course of 1.5 years.

In Nov.2017 ALP 218/ALT 64/AST 40.

May 2019 ALP 338/ALT 104/AST 75.

Hepatologist performed a Fibroscan - result was 5.2. I was told we caught this quite early and most likely do not have any damage to my liver yet. He suspected I may have had it for 2-3 years. I have been prescribed 750mg URSO once daily and told I require blood tests every 3 months. I will have a follow up appointment with the hepatologist in one year to see how everything is going.

To say my world has turned upside down would be an understatement. When I was diagnosed 2 weeks ago I was shocked and lost for words. Now I have many questions and am terrified as to what my future may hold. I found this site and am hoping to gain some understanding and some answers from people who have been living with this disease. There is a lot of contradictory information on the internet and I find it's easy to get lost in it all.

Some of my worries and questions are:

How long does URSO take to start showing results?

Will I be able to see any change in my LFT results at my 3 month blood test?

With my LFT results - what do the result numbers look like when liver damage starts?

I have a very active life involving family, friends and sports which tends to include social drinking. I've never been a big drinker but do like to have a few drinks on the weekends. Do I need to stop drinking alcohol completely?

Life expectancy - how long have people been living with their diagnosis?

I feel as though I am somewhat asymptomatic - I have sporadic little pains in the right side of my abdomen, itch here and there but nothing crazy, fatigue but I am an extremely busy woman. This is all playing head games with me now - it this normal or is this the disease?

Is it best to avoid headache/pain reliever medication or cold/flu medication now? I've never been a pill popper for headaches or aches and pains and such anyway but am wondering.

Please share any experiences and insight you all may have.

38 Replies
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Hello and welcome to our group. First of all please know that we've all been through initial diagnosis phase and so we get it.. we know what it feels like.. And how it plays with your head.

This is a great group for peer support and well,organized information on all aspects of PBC. This forum on Health Unlocked is sponsored but the PBC Foundation UK. They are an amazing source of quality info on PBC. you can join (it's free)

I am in the USA but still joined and found much much value.

Here's a link below to a guideline document you might want to save, print as you are new to all of this. It can really help with organizing questions for doctors visits etc.

Also, I have a link to a post by Robert from the PBC Foundation regarding life expectancy.

Please know that there are other younger moms like yourself on board here and I am sure they will reply too.

Most of all.. hang on to thought that it's been caught early and that there ARE treatments that can help slow progression. Also, there are promising new things in th pipeline that you will benefit from..

Check out these links.

Hugs,

Eileen

pbcfoundation.org.uk/upload...

healthunlocked.com/pbc-foun...

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I was diagnosed recently too at 40 and felt exactly the same huni. The pbc-foundation will be your lifeline. Here and Facebook groups will help too. Appointments never come quick enough and you will be in limbo. But you are not alone. Everyone's symptoms are different, my worst ones are the itch and the fatigue. Pain is starting to become an issue now too. But honestly no matter how silly your question is post it here. Even if it is just to chat. Hugs xx

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Firstly.. Dont panic.. You are the same person today as you were yesterday... I always say that as it helps put things in perspective...

Urso will usually work fairly quickly.. But ltfs may be a little while showing change.

You are obviously by the sound of it in early stages.

Anything that puts a strain on your liver e. g.. Alcohol is best avoided.. But I was told an occasional glass... But check with gp...

I don't want to bore you with my story.. But in this instance it is relevant...

I was diag whilst I was pregnant with our 4th child... They found out I'd got glandular fever as well... I was suddenly very poorly and baby was delivered early.. He's now 20!!!

I was given a biopsy and told I was quite a long way on stage 3/4...and would need a transplant in 5/10 years...

Very scary with a prem baby and 3 others under 10...

We muddled along as the combination of pbc and glandular fever had taken its toll and I was never back to work after that.. But that is unusual I think...

My point is that..it was 20 years later that I needed a transplant... 2 years ago. I think I'd had symptoms for at least 15 years...

It's highly likely that you could be an old lady before your pbc gets worse...

Enjoy life, eat well, do all in moderation and have fun with your family... Don't let a diagnosis spoil your day to day life...

Paracetamol are usually fine for general aches and pains... But ask gp for sure

You are bound to be shocked.. There are lots of tips etc.. Which may help but you have plenty of time to find out all that stuff..

Have a lovely family day out if you can... That will do you more good than worrying about pbc...

My very best wishes.. If you want to chat more.. Message me directly if you like...

I was 36 at diagnosis so can understand how you feel.. Cazer xx

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What a great reply cazer. When I read posts and the issue doesn't apply to me, but seriously affects the person posting, I feel helpless and unhelpful. All the replies above remind me what a great site this is for us all and you have really pulled it out of the bag for Katienharley, and for us all. Thank you.

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Thanks.. Not sure if it was good or bad or helpful.. So that's reassuring.. Xx

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Katie, I was diagnosed in March and put on Urso. Just last week had my first 3 month consultation after starting medication. All my results were back in normal range and the doctor told me to live my life without PBC as the focus. Your situation sounds almost same as mine except my daughter is now 21. I was still terrified and went through all emotions and thoughts you are having. I asked my doctor about pain killers and alcohol and even hair dye! She reassured me that I can take a pain killer if I need one (like you I am not a big pill popper) and that a drink now and again is fine. Like you I am early stages, some damage picked up in an ultrasound and biopsy but I have no symptoms and no adverse reaction to urso. I just have to take blood tests now every 3 months and back to doctor in 1 year. I know it sounds trite, but try not to worry too much. Once you wrap your head around the initial shock you will be able to focus less on the actual diagnosis and start relaxing. All the best for the next couple of months and try not to stress as that can make the condition worse. Since I have relaxed about it I have started to feel better in myself...I am just more aware of my health.

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P. S just wanted to make sure you realized I was late stage at diagnosis so in that way very different xx

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My consultant told me nearly everyone dies with PBC but not from it.

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My hepatologist told me when pbc is caught early & the patient responds to urso, patient has the same life expectancy as normal population. He said, think of urso like taking a vitamin.

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Mine said the same thing.... only he added avoid alcohol sugar and carbs should be low...... but no alcohol

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He told me it was okay for me to have a drink every now & then. I already was more or less eating healthy so he had no diet advice for me. I asked if eating sushi was okay & he said yes.

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Mine said no

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I was not a big drinker to begin with. I have at most 4 a month if that much.

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Ninja- please would you share your recipe for kombucha? I am so much better when taking regular fermented food or drink and would like to vary it. Maybe it's not just antibiotics that clobber the microbiome but PBC itself?

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Kombucha

Half-Gallon Batch:

* 1 tablespoon loose tea OR 4 tea bags

* ½ cup sugar

* 6-7 cups water

* 1 cup starter tea or vinegar

& the bucha mushroom of course

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Ninja - thank you So much - Any tea, right? I had some homemade elderflower cordial yesterday that had fermented in the fridge. It tasted good, but more, I could feel a kind of celebration going on inside. I never felt so comfortable after a meal before! :-)

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I make mine organic with 2 green teabags & 2 black ones. I bought Paul Newman’s brand. I also use organic sugar.

What a coincidence, I had a pear elderflower spiked seltzer water yesterday at July 4th BBQ.

The week before I had a St Germain elderflower liqueur spritzer. Was at an event.

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Did you make your own scoby? It has been a stonking good year for blossom. I made cordial, jelly with lemons and elderflower and decorated a lemon cake with some flowers. I'm looking forward to the elderberries! When a good year for something organic turns up, it seems like a nudge to eat and drink and be well on it. Your pear elderflower sounds like a good way to drink to July 4 - thank you for sharing :-)

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Sounds lovely all the things you can harvest the elderflowers for. My Scoby came from a friend who bought hers.

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ninjagirlwebb - my scoby is doing its magic! Thank you for the kombucha recipe. It is having such good effects that I now have water and milk kefir on the go, and I made a sourdough starter! The amazing thing is how weightless my abdomen feels now compared to how it was before. Really comfortable.

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Hi Katienharley,

I was recently diagnosed ,young mother with two small children, i know it a shock i totally understand how you feel, trying to come to terms with being diagnosed when you have young children, you worry for your kids as you just want to be healthy for them to see them grow into adulthood. when i go for follow up bloods the nurses would make comments ' 'oh but your so young to have a liver diseases' ' comments like that doesnt make me feel better it makes me feel worse.

My point is you are not alone, there are young mothers in this group with PBC and we understand what it like.

I was diagnosed in March this year at a much later stage than you, like you said you are at an much earlier stage so you will be fine, I have learnt to not let this disease consume my daily life, i am more aware of my health now so i eat more healthier meals and try to enjoy everyday with my little ones.

All the best xx

Tina

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Hi, I'm very similar to you in that I have 2 young children and active life, I was diagnosed at 35 am now 45, last fibro scan was 18 😳 but other than that I lead a very similar life as i did before diagnosis, I was started on Obeticholic acid a year ago but have found the side effects of itching have driven me mad, so have recently stopped taking it and waiting to see what my consultant suggests, still on urso so hoping to stick with that. Like you I've never taken medications much, the fatigue sometimes gets too much but in general I feel well and maintain 2 jobs, kids, usual running of home, def good to keep up with exercise and look after yourself, it is scary but I live my life as before except for the alcohol, love non alcoholic beer now!! Occasionally have a very diluted wine as a treat! My consultant said my life expectancy should hopefully be normal.

I hope you get the support and help you need to get your head round it all. Stay well xx

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Hey Katie please do not be afraid what I found that helped me tremendously was staying away from dairy and red meat also eating as much plant-based food as possible and taking 1000 mg of milk thistle everyday and the 1000 mg or as close to it as possible of vitamin E everyday. You don't need to totally eliminate alcohol, but try to keep it at a minimum. Try to keep meats lean and eat more fish. Lots of salads, legumes, veggies and root veggies, seeds and nuts. If you like protein shakes, use the pea protein powders. NO DAIRY. Drink almond milk, cashew milk, walnut milk, if ypu7 muust have milk. Must do vegan cheese and sour creams and yogurts and ice cream. You can make whipped cream out of coconut milk. Just get a regular can of coconut milk and put in fridge. When cold, open it, drain the water and beat the cream until you get it whipped. Take a daily multivitamin. For itching, once you remove the red mrat and daisy you shpuld be better. I made an equal parts mix of almond oil rosemary oil avocado oil olive oil and castor oil. Put it on every day after bath/ shower. Really helps especially at night. If you take this care of yourself you can live a very long time. I'm doing great with my numbets almost down to normal and all itching is gone. No more pain either. Fatigue also gone.

God be with you on this journey and feel free to write me anytime.

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Hi Interesting Regarding the milk thistle, i have been wondering if I should take it , sounds like milk thistle has helped you, what brand are you taking? I might try it myself.

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Be cautious. Self-prescribed otc supplements, or ANY over-prescribed substance, can cause an imbalance in ways that their manufacturers have never researched. Nothing in a bottle is as good as healthy living, but much that is in a bottle and sold as good for you is not. There are complex mechanisms in our bodies that can be messed up or switched off either temporarily or irreversibly by overdosing on supplements. Don't mistake anyone's enthusiasm and beliefs for evidence that a regime would be better for you than the one you have. You are doing so well. PBC is tough. You can do this. Live well, love well. Follow PBC Foundation to learn the latest developments and the current best practice in living with PBC. :-)

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Yeah i asked my Hep and he pretty much indicated what you just said aswell, eating healthy is more important. Thanks :-)

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Thank you Dlahullier for your in depth tips within your message which I'll be trying out for the itchy skin side of things.

I'm also interested in your whipped coconut milk idea too which I'm going to give a go!,

I'm currently under investigation for possible PBC! Routine bloods just over a year ago indicated weak but positive for PBC. I've had an MRI CT and Fibro scan which are all fairly clear.

My first 6 months bloods were fairly high but since my healthy eating and exercising programme started my bloods have lowered😊. I still have odd crappy days /weeks of itching, tiredness and aching muscles within my legs and arms. Are these part of your symptoms?

I do keep a diary on my computer which I shall be discussing with my consultant in October. My GP is now sending me for further blood tests as my symptoms are persisting but not bad enough to stop my life style as yet !😊😊

Thank you one again for sharing your healthy ideas

All the best

Trish

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Also I only take tylenol for pain, no Nsaids they are murder. And any other meduvations that are metabolized in the liver you should avoid.

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I agree with you, only tylenol for pain. There are some medications we need to take that are metabolized in the liver, but if we didn't take, the outcome could be worse, e.g., antibiotics. I've made up some of your oil mix without castor, which I don't have. It looks and smells good.

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The above advice is great and this site helps a lot. The only thing I'd add is take your Urso at the exact same time every single day. Keeping your Urso levels consistent will keep your numbers down. I was diagnosed 8 yrs ago with numbers off the charts and liver damage showing in my biopsy. The doctor kept increasing my Urso until I was taking 500 mg twice a day and my numbers have stayed normal ever since. I'm 110 lbs so I'm taking a higher than normal dose. My last scan showed a perfectly normal liver with no damage and I have no symptoms. My life expectancy is also normal. I attribute my success to correct dosing that works for me and taking my medications at the exact same time every single day. I use my phone alarm to remind me.

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I am elated at your response. The only diffetence for me is tjat I cannot take any medication for the liver because I already have cirrhosis. But my enzyme levels have come down to almost normal with what I am doing. Blessings on your journey and great advice.

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Hi. I am a 38 year old man, living in Germany. This is a great group, you are going to find lots of help. Great, caring people, ready to help each other, believe me. I was diagnosed in 2015 and I am leading a very, very active life. Husband, teacher, athlete, an outdoors man 100%. Everyone is different but I guess fatigue and limb/joint pain are my worst enemies and they haven't won so far! I have been on Urso since the beginning, 500 mg twice a day, mornings and nights and works perfectly. I don't drink (I'm Muslim) and not a fan of painkillers anyway. I don't take painkillers (doctor's orders, German doctors are very strict, but each patient is different.) Point is, all of my doctors told me the same thing: with an early diagnosis, like in my case, yours etc, we can live as long as any other person. Besides, in reality, no-one can really know, right? We are just like everyone else, that's how I see it. Enjoy your life. Our disease doesn't define us. It's just a part of who we are. A positive outlook on this, will definitely make a difference. You're not alone. We are all here. We are fighters, we've got this. You've got this.

Have a great day,

Aslan.

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Hello Lion, Good to hear that you are living well with PBC. I wonder, did you take the protein powder you were considering for muscle-building, and if so, what have been the results, and has this affected your liver function tests?

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Yes I have been taking it for a while now. My doctors said it's just fine. And I have seen excellent results. My stamina is way better, muscle-building ability has of course increased moderately. Every single blood test/ liver test is absolutely fine. Thank you for asking. Is everything going well with you?

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Thank you. That's good news. I don't know what causes muscle wasting of PBC. I have been told it is age-related but surely that's an oversimplified explanation and doesn't say how it happens to young, very physically active people like yourself. The most extreme wasting is my left upper arm and trapezius. The feeling of build up of lactic acid I get here is such I can't always hang clothes in the wardrobe, a light movement of short duration that feels like lifting a too-heavy load for too long. Many ordinary activities of daily living are tough to do. This may not seem a big problem. Overtime it becomes one.

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I had that feeling prior to being diagnosed. I couldn't even lift my arms over my head without feeling excruciating pain and overwhelming fatigue, I was seriously frightened. The shoulder area was mostly affected. The moment I started taking Urso, that pain went away and everything went back to normal-ish almost immediately. I think being physically active, doing sports for example, even though it might seem overwhelming at first, definitely helps with the pain, exhaustion, muscle building and it's healthy. Worked for me. I do hope it helps everyone else too. Isn't there something that you can do about your arm? Any other suggestions? What do your doctors say?

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I only recently had opportunity and motivation in alignment to talk about it to anyone! :-) There always were bigger issues! And it has crept up over the past year. I am seeing a rheumatologist next week. I agree with you and the accepted wisdom, get moving, especially when it's tough going. Too easy to lose muscle tone and not regain it. Possible to regain lost tone with effort. Vital to do it before joints give out from lack of support. My worst enemy, at times, is losing hope. When I have it, it doesn't seem possible that I'll lose it. When I lose it, nothing seems worth the effort. When this happens, if I'm lucky, I'll remember to do some testing of my thinking with crossword puzzles etc. This usually shows me that my brain just isn't doing as well as it could. It reminds me that my lack of hope is an illusion. The fog clears in its own time: I don't feel much in control in this aspect of our condition. It seems like we are constantly deciding when to push on and when to accept because to get these wrong is to cause ourselves more trouble. I'm just moaning now, but I'd like energy to do something more than just empty the dishwasher or clean the house without having to take any drugs (other than coffee) to make it happen. I'll put it top of my list, find out HOW to make that arm better. I've been asking the wrong question, IF I can make it better! Thank you for your reply. It has helped me.

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I understand you have it rough but I know things will turn around. Just wait and see. I am so glad I helped; it made my day.

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