Diagnosed a week ago today

Hi all, I have been participating in a few posts and had some questions. First of all im in the US...Sterling Va, and feel very lucky to have a knowlegable PA who works under the Medical Director of Transplant Hepatology at Georgetown Medstar (among a lot of other jobs at the transplant center!) who I feel completely confident for my care.

I presented extremely high Alkaline Phosphatase levels of 1177 and Bilirubin of 0.6 and asymptotic except a nagging tenderness on my right side. After second set of blood work I was sent for an ultrasound which showed normal everything....then off Georgetown Medstar to my doctor. Dr. Keller (PA) interviewed me and from the start she seemed giddy, on the edge of her seat, asking question after question. I was taking Diclofenec Sodium for a torn rotator cuff and my PCP thought this was the reason for the elevated levels. She informed me that her hunch, given my family history and symptoms, was a hereditary liver disease but she wanted more blood work and an MRI to get a definite diagnoses and to know how to proceed with treatment. Two weeks later I'm being diagnosed with PBC, given a script for URSO, scheduling a liver biopsy, and feeling relief that there is an answer for a lot of the issues I have been having the last 15 years!

I found his site, thank you all for being so open and supportive, and a lot of my questions have been answered. The URSO is working great with the pain in my side, although I feel the dosage needs to be adjusted as I'm on 600mg 2x's a day and the pain lessons up after I take it then it sets in about 6hrs later and I still have 8hrs until my next dose....

My delima is that I'm on my feet from 6-12 hrs at work and it is killing me...anyone have any tips they can share? Sitting down to rest is out of the question!

I'm noticing my face has been clearing up! I just turned 50 in December and have dealt with "adult acne" my whole adult life then diagnosed with "roascia" 15 years ago that has progressively been getting worse. This morning I looked in the mirror and my face is nearly CLEAR for the first time in over 5 years!

Something else I experienced this past fall and is just clearing up is extreme dryness on the PALMS of my hands....tops were fine but palms got really bad. They turned almost leathery not so much cracked and dry which was very weird. Anyone else experience this?

I also experienced "flushing or warming sensation" for 10 years that I thought was early menopause but that has lessened as well. Does anyone else experience this?

I don't have the intense itching everyone else speaks of, I'm counting my blessings and making sure I'm applying moisturizer!

In the last year I've experienced the dry mouth, thought it was from not drinking enough water....scared it was from diabetes even though tests showed not....I don't see that symptom mentioned...anyone else deal with this?

I've had joint problems for years as well, most recently my ankles....should I see a rheumatologist or is this something that will take care of itself once the liver is no longer stressed?

I also want to talk about nutrition, I've seen mentioned on here a "clean diet" and I'm very close to that now....I actually like healthy foods and water! I've been trying to lose weight, and have lost 12lbs since October so now it's just a matter of filling in the gaps for grab and go snacks. Has anyone had any experience with using a clean diet to control the symptoms of PBC? Anyone on an "anti inflammatory diet?"

Also want to talk about Gluten Free Diets? Anyone with PBC do a gluten free diet with measurable success?

I read an article that correlated the genetic marker for PBC and food additives...anyone have any information on this or experience?

How many of you have a sibling, parent or grandmother with this disease? I'm most certain my mothers mother had it and it was undiagnosed because of lack of knowledge about the disease. She had a lot of the markers including osteoporosis that led to degenerative disk which resulted in extreme pain that led to her death of a heart attack. She had jaundice, thyroid disease, always fatigued, itching, dry mouth, that we are remembering....she most certainly was the carrier....

Ok, now that I have written a book I'm gonna stop! Thanks for your responses and your time reading this!

11 Replies

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  • Hi tonia66

    About two years ago I changed my diet to more organic vegetables and some fruit and a good deal less meat. I no longer eat processed meats like ham and try to avoid anything high sodium. I now make my own soups in winter and lots of salads in summer. Well done on your weight loss, I also have lost weight this last year. Like you I have read about the gluten free or auto immune diet but then you read something else against it, but what is constant is the advice to eat a well balanced healthy diet with plenty of water.

    I also have rosacea and pernicious anaemia and if I look back through our family on my mothers side there have been auto immune diseases suffered by mother and grandmother alike. It is good to read that some of your troubles have minimized it is amazing how this horrid disease impacts us differently.

    best wishes

  • I've been doing as much raw as I can...interesting I've been craving salads and berries for about a year now!

    I've looked into the gluten free a while back and try to do that when I can, it really makes sense from a healthy standpoint but not sure how it would make this disease any easier to live with...

  • Hi Tonia66,

    For your joint problems, I'd definitely see a Rheumatologist. Even if they ultimately decide it's nothing significant or osteoarthritis as opposed to RA or anything else, at least you'd know.

    Regarding gluten free diet, I'd get tested for sensitivity or intolerance by your doctor first as many 'gluten free products' can be higher in calories and not necessarily better for us at all.

    Adult acne - the bane of my life since my daughter was born 26 years ago. Never had it as a teenager. Lack of sleep and any serious stress makes it worse but cutting down or eliminating cows milk might help. I haven't completely eliminated cow's milk products (thinking osteoporosis prevention) but I have drastically cut down on them and I've noticed a huge improvement. If you've been dieting since October you might have inadvertently reduced your cow's milk intake too? Just a thought. I still have a live yogurt a day and the odd tiny nibble of cheese in a week but I've changed to Soya light milk in tea/coffee (bit of a weird taste at first but you soon get used to it). The soya is also supposed to help with peri-menopause symptoms as a bonus.

  • Badpiglet, I didn't have acne so much as boils that would come up from deep in my skin...I would feel them for weeks prior to them becoming visible....and they were painful...

    I woke up yesterday morning expecting to see 5 of them to have popped up on top of my skin like normal and they were GONE!

    This amazed me and scared me at the same time....amazed me that they were gone and scared me because I know toxins can manifest itself thru your skin....IF they are not being removed by your liver....how bad REALLY IS my liver??!! Time will tell..biopsy in the 8th of May...

  • Cows milk...I've not done much investigating into that one...I do have a bowl of cereal at night, yogurt for mid morning snack and cheese on cheesy things...lol. I don't "avoid dairy" so much as use low or skim milks and cheeses....

    I do like soy milk, organic...it's awesome for my nails and hair when I can afford to buy it!

  • Hi Tonia66

    Dry mouth is a common symptom, I never go anywhere without my flask. I know what you mean about your skin. Mine has improved since I started taking URSO. I didn't have acne but was beginning to get a lot of small spots on my chest and face - think they were liver spots, but they are nearly all gone now. I'm hoping that means the urso is working.

    I don't have anyone in my family with PBC but my sister had at least 3 autoimmune disorders (after the 3rd she told them she didn't want informed of any more), the consultant said he thought that the gene was probably in our family.

    I am on my feet about 6 hours a day, I don't know how you manage 12! I do a lot of walking between work and all the normal day to day stuff and some days feel like my feet will drop off.

  • Hi Angel, I just got off the phone with my Specialist...have I mentioned how fortunate I am to have her?? She is AWESOME!

    So, she was going to put me on 600mg 3x's a day but ended up only doing it 2x's a day (12 hr spacing) to see how I responded....I called her yesterday because I can a,ready feel a difference but the morning dose is wearing off before the night dosing..I was thinking time to add the 3rd dose she had talked about....she said NO! Does not want to do that till we get the labs back....instead, she wants me to take 2 in am, 1 mid day and 1 just before bed....thru weekend and if that works stick with that...if not switch it up to 1 in am then 2 b4 work midday and 1 b4 bedtime....did I mention how awesome she is??!! Lol

    I'm back to work tomorrow 1pm to 11pm...we will see how it goes! I'll keep you updated...

  • sounds like a fantastic consultant. Can make all the difference to have someone that you comfortable and confident with.

    hope work wasn't too bad for you.

  • Hi Tonia66,

    As Angel_b wrote, "dry mouth is a common symptom" of PBC, but joint pain can also be a symptom (still needs to be checked out by a specialist though):

    mayoclinic.org/diseases-con...

  • Gotcha Diane! Just talked to my liver doc and she is setting up a referral for rheumatologist AFTER graduation for me... but honestly, in the last two days...as with other symptoms... the ankles have been better! Will report back on Monday or Tuesday after I'm on my feet all weekend!

    Thank You!!

  • Hi tania66

    Sounds to me as if you have different overlap autoimmune conditions, i have a lot of your symptoms, i would definitely see a Rheumatologist for a autoimmune profiling. I also have family members with autoimmune conditions.

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