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!