PBC is a rollercoaster ride isn't it? But for now I'm gonna enjoy my good news. Had some extensive labs done recently. My liver had been aching as well as terrible muscle aches too. I have to be on RA drugs that can complicate the whole liver issue... anyway, after 2 rounds of steroids and upping my Sulfasalazine for this RA, my liver enzymes still went down. The URSO is keeping my Alk-phos steady. It fluctuates between 138-180. Right now it's at 148 down from 157 two weeks ago. Other liver enzymes are in normal range for now 🙌.
I had family visiting for 3 weeks and cooked a lot. (That means "ate" a lot) Let's just say I wasn't sticking to my strict diet. I still didn't have any alcohol... too scared to go there still. But I did make my mama's Enchiladas and we had Chinese twice!! Not to mention buffet style breakfasts.... Ugh!
I'm back on the straight and narrow and just happy that this big lab work-up came back on a good note. I'm still taking my supplements and still trying to drink lots of water.
Prayers for all of us always!!
Stella
DX PBC 10/16 early stage, DX RA 4/17
Written by
Ktltel
To view profiles and participate in discussions please or .
Its so hard to get my head around this disease recently diagnosed do doctors know what causes it i keep going over everything in my head any advice would be apprrciated very depressed since i got diagnosis
GrittyReads is right. Post a new message. Pour out your concerns. Give as much information as possible about what your doctors have told you, your lab numbers, test results and your symptoms. This way ones can make a few expressions from similar experiences.
Just understand we have all been where you are. It does take a while to sink in. It will get better.
I have AMAs (M2, high level), but I don't have PBC. I have my liver function tests checked every year, and all has been fine since AMAs were first spotted in 1992.
There was a brief, unpleasant phase when a new-to-me- consultant 'sort of' diagnosed me as 'sort of' PBC ... which caused havoc with Insurance. However, with my GP's blessing, I saw one of the UK's leading PBC specialists, and after he checked my health history, family history and did lots more tests he confirmed I don't have it. I've never had any symptoms, and am generally slim, fit and healthy, for my age.
If you have got it, do try not to worry, as stress is the worst thing for all autoimmune conditions. Also, awareness and knowledge about PBC is so much better than it used to be, the medication makes a huge difference, and there are ways of helping yourself by good healthy diet, exercise, cutting alcohol, and trying to cut stress.
So, have fun and enjoy yourself: dance, or play, or sing, or party your way to being as healthy as it's possible to be. Also, avoid worry and people who stress you and make you worry.
That's a good attitude, I embrace my good days more now than ever, because when I have bad days it's hard to deal with them as you know, I think there is a learning process that goes along with chronic illness after living with it for a while.
How are you doing? I had to familiarize myself with your posts. My hair is getting thinner and thinner in just 10 months that I've Been diagnosed. Plus I take Sulfasalazine for RA too. I've read that causes hair loss too. I had A LOT of hair before this... thank goodness. But it's most definitely falling out. My shower drain and hair brush don't lie. 😕
I am having some better days lately I had to cut my URSO dose in half as it was making me too ill to eat or function, my doctor said we will slowly increase back up to where I need to be and this is a very common problem with URSO. Of course I worry I am progressing by not being on the full dose but my doctor said it's a slow progressive disease and not to dwell on it, so I try to live each day to the fullest and stay positive I will not progress fast. So nice to have you and the others on here to talk too and get information from just a blessing like we are all angels looking out for each other right!
I agree. With so much in the world going wrong, and then add dealing with an illness on top of the day to day.... It sure is nice to have each other as sounding boards, or for support. I've learned so much on this forum. I've also met a wonderful group of women and a few men too on here. We may be at different stages but your right...i can sure feel the care and concern from others too. ❤
Yes exactly such a blessing to help each other nothing better! Talk soon again have a good night there I am going to bed now been a long day here . Hope you have a good night sleep.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Could high AMA be something else? 
MRI Update - Disease Reversing
Stage 3 Grade 3.5
High ast 
