Just recently diagnosed with PBC: Hi! I have... - PBC Foundation

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Just recently diagnosed with PBC

Krichards1971
Krichards1971

Hi! I have been recently diagnosed with PBC. Definately not what I was expecting since Dr thought it was Lupus or Rheumatoid Arthritis. I am 45 and started having these different symptoms 7 years ago like fatigue, shortness of breath, itchy rash sometimes, irritated eyes, dry mouth/throat,severe hot flashes. Not just a few, but at last 50 a day and to the point i was miserable. Night sweats. Liver enzymes have been elevated for several years. Positive ANA. Recently went to Rheumatologist and blood work showed abnormal labs. I was referred to gastroenterologist. Labs showed abnormals and I started Urso yesterday. Ive been on Cymbalta and it stopped the night sweats and reduced the hot flashes. The past few months my memory is much worse. I am trying to find someone who can give me some advice as far as diet and the outcome and all. Doc told me that changing my diet really wasnt going to matter but i very much disagree with that. Has anyone had all these symptoms and has the Urso and diet changes helped? I also have bone, joint and muscle pain.

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Hi Krichards1971

Your doctor was right there is no specific diet that helps with PBC but a healthy varied diet rich in vegetables is always suggested. For myself I was diagnosed in 2006 and once on URSO I found I settled down and carried on more or less symptom free for about 8 years. I then stated itching and have tried various diets, cutting out gluten or dairy but it really did not make any difference. About a year ago I decided to really set to and lose some weight which I have done with a carb free diet and lots of vegetables and a little fruit.

Newly published on the British Liver Trust web site is dietary advice for specific conditions

britishlivertrust.org.uk/li...

if you scroll almost to the bottom of the page PBC and PSC are covered in the same heading.

It is becoming more recognised the one of the symptoms of PBC is brain fog, I do not know if taking URSO will help with this but perhaps something to wait and see and discuss with our hepatologist when you next see him/her.

I also suffer with joint pain and odd sensations and finally took myself off to the doctor to be told I have neurological symptoms and have been give yet another tablet. The lesson I have learned here is not to assume that everything that is happening is PBC or age related.

It is a good idea to check your patient information leaflet (PIL) on the URSO to make sure you are on the right dose.

Menopause symptoms are quite a bit of a distant memory for me, because of "women's" problems I had an hysterectomy and truth be told it was the best thing I did - but that was for me - however I did used to find the menopause cake quite useful.

womansweekly.com/recipes/wo...

I suspect you will get a few more answers after the weekend, in the UK it is a bank holiday and I suspect some of us are away as I have been. I did not think to look at your page to see which country you are in but I hope you have a good doctor and a support system. Welcome to the group.

If you have not already done so, join the PBC Foundation through the link above, lots of useful information in the Member's section and in back copies of the Bear Facts magazine and of course usually (when not off on jolly jaunts) there are a good bunch of fellow sufferers on here always happy to share.

best wishes

Thank you! I have had a partial hysterectomy and im sure im in menopause. Also I have fibro. Just hope I do good on the Urso. Dr said the PBC was probably what was making these symptoms worse. Im nervous and don't really know what to expect. I'm so glad I found this site!

Hi I am in the US , in Michigan. Got diagnosed last year stage 2 . I get the brain fog with memory problems, very common I read. The URSO gives me a few side effects so my dose was cut in half and am working back up now. Do you see a liver doctor also? I do get some symptoms you mention very common in others too. I asked my liver doctor about diet she said eat what makes me feel healthy and no special diet but to cut down on salt . I find anything fatty I can't eat anymore so my diet is mostly chicken and fish fruits veggies.

Hi! I live in the US in Alabama. I see a liver dr and they started me on Urso 500 mg 2x daily. The memory problem, fatigue and shortness of breath seem worse lately. Its so frustrating and i worry if i will get to the point i have to quit work! I hope not. But im so glad to have people i can reate with on here.

Good you are seeing a liver doctor! What did your doctor say about the shortness of breath? I too get that can get so bad I have to stop walking, I was told mine is allergy related but I have always wondered about it being PBC.

He thinks the SOB is related to the PBC. I have scan Wednesday so maybe they can tell what stage im in.

Hi KRichards

As a nurse and one who has had PBC for 14 years plus I would be very concerned that anyone would casually attribute shortness of breath to PBC. Shortness of breath is a serious symptom and can be caused by an array of conditions - BUT I don't believe PBC is the culprit and would not assume so. Please see your Dr as soon as possible to have this significant symptom investigated.

Best wishes

Karaliz

I agree that the shortness of breath can be related to other things. I have read that people with PCB can develop breathing problems. I'm just overwhelmed lately and feeling bad lately makes it worse.

Thank you,

Kathy

I cannot remember exactly how, but I remember my heptologist stating that shortness of breath has some sort of connection with late stage PBC. I'll send him a message regarding this in the morning. He's pretty good about replying rather quickly

Kryz
Kryz in reply to Krichards1971

My shortness of breath was from low hemoglobin.. I also suspect I have PBC

Oh good luck let me know how it goes. I need to research why we have shortness of breath with PBC? Did he explain it to you?

No but I will find out Wednesday and let you know.

Hello, welcome to our world & at the same time Im sorry you're here. You'll find that everyone here loves to help lift each other as well as listening & learning together. Plus, we all tend to get a little bitch every now & again😉. I was diagnosed in 2012 but I feel I've had PBC since my early adulthood due to digestive issue with no one being able to actually pinpoint why. I was at stage 2 at time of diagnosis. Im a rare case because I seemed to have progressed rather fast into stage 4 PBC. I unfortunately went close to 18 months without treatment because I lost my insurance. When I was able to start treatment again I became a non-responder to Urso. My GI then decided to refer me to a university heptologist at Indiana University Health. Im from southern Indiana. He managed to put me on a specialty med called Ocaliva. It acts as a type of booster with the Urso. It has helped. Like I said Im at stage 4 & I also suffer from cirrhosis, varicies, hypothyroidism, UC, fibro. The brain fog is crazy. In my case the brain fog is due to my liver no longer being able to filter out the toxins in my blood like ammonia. When these toxins build up they effect the way my neurons of my brain work. It's as if they're gunked up🙄. I take a medication called Xifaxan for this issue. This is just a rough draft of what i go through. You'll find after reading around that this crazy disease effects some differently than others but at the same time we all have so much in common. Feel free to check my profile & the different posts I've added here. I have learned a ton from all on this site. It has truly been a godsend for me & Im sure you'll understand what I mean. Ask questions, vent, & learn. We are all here to support one another because the only ones who truly understand us, are those who are traveling down the same bumpy road.

Stay strong❣️

Shannon

Thank you!!! It helps to talk with people who can relate to what you are going through. I have my scan tomorrow. I don't know how long it will take for the results. Im glad I finally have a diagnosis, but nervous!

Fibroscan?

Try not to get stress over it. Stress is the devil when it comes to PBC. You need to know where you're at so you know how to handle things. We've all been right where you are, nervous is putting it mildly. It'll take some time to adjust, but you'll eventually learn to live as well as you can with PBC. I have hard days & good days. One day at a time right😉.

Hi krichards1971,

You've come to the right place. I have muscle aches and joint pain too. I'm taking RA drugs that have helped with the joint pain but not the muscle aches.

I read on here from others that diet most definitely plays a key role in symptoms. For me when I eat carbs or sugar I feel worse... More night sweats, muscle aches and overall cruddy feeling. I try hard to stay away from those as well as dairy and fats. I fail A LOT!! I'm trying though. Also, try and drink lots of water...... I Googled liver friendly foods and eat those, as well as foods to avoid when you have liver issues, and try hard to avoid those. I read lots of good advice on here about juicing and eating vegan too. What works for one person may not be your cup of tea... but, I will say that diet DOES play a big role (at least for me) in feeling better.

Keep us posted.

Stella

Early stage PBC

RA

Tendinitis

Krichards1971
Krichards1971 in reply to Ktltel

Hello! I have been trying to stay on a healthier diet by cutting down on sodium and eating liver friendly foods, but I blew it out of the water today and cheated big time. Its hard, but I'm going to try to stay on the healthier side of the road. I had never heard of PBC until I was diagnosed. Its great to have a big support system here to relate to!!!

Hello and welcome.

There would appear to be many changes all happening at once. As said above, eating a varied and healthy diet will help most people in terms of symptoms.

You are recently diagnosed, which can be a shock for many. Add to that the stress of your symptoms and managing the changes in your life. These could all be contributing towards your memory.

I appeciate that sounds a little crazy but invite someone to ask you some easy multiplication sums: 7x5, 6x3, 2x9, etc. Then when you are happy and confident, get them to shout, repeat quickly or stress you out and see how much you struggle to answer the questions.

There can be cognitive function issues in PBC, particularly younger patients who experience bad fatigue and this is being researched more and more. That said, there are ways to help your memory: addressing your fears and your stresses go a long way. Both stress and fatigue enhance memory problems.

There is so much more we can offer to help, in terms of information. I do hope you have also joined the Foundation as we can help.

Yours,

Robert.

Thank you for your advice. I definately have the cognition difficulties. And I will join the foundation. I'm just glad I am not alone in this. I had never heard of it until I was diagnosed. :)

I'm male 40 years old. I got pretty much all the symptoms you have mentioned here after I was diagnosed and started urso. I was diagnosed very early and that time I have know symptoms. it was my co worker who suggested me to check my liver after that everything is history. Now,I'm here with guys sharing my stories😁.

About diet, I think he meant to say food Has nothing to do with pbc because it is a autoimmune disease so wether you eat or not your own body will always attack your body..I don't have restriction to any diet even alcohol either but about alcohol he told me to drink very moderation!

People with pbc tend to have thyroid problem, sugar problem, digestion problem, and other autoimmune problem as well..Diet won't heal pbc but it can help you live healthy and longer and might help other problems.

try to eat healthy nutritious food like lots of veggies, legumes, beans, fruits and lean meats!

We have other thread here about diet.. couple pbcer exchange their daily digest I did mine too..

Hope you understand my writing 😁and let me know if I'm helpful for you or not

I live in Frankfort, Kentucky!

Helpful! Thanks!

Th

Thank you!! It is very helpful. Do you have the shortness of breath also?

It been a month or so I'm feeling weak and shortness of breath for a moment like just happen for a minute or 2 then I'm fine..I'm going to ask my dr. In my next visit..now I also notice I burp a lot if a eat too much or greasy food..

Hi, I had all the symptoms you described when I was diagnosed. The shortness of breath in my case was due to anemia. I have had recurrent periods of anemia since I was diagnosed. My consultant doesn't think it's PBC related but I think it is.... I am much better today than when I was diagnosed even if there are very few days when I feel completely well. So hang in there, there are better days to come!

J

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