15 yrs with pbc

[Teri8672]

I was diagnosed when I turned thirty. Seen drs every 6 months allergic to urso allergic to many many medications. I’m stage at stage 3 as of now. Fell down in 2015 broke my knee and injured my back had sergury then got staph infection started having stumache issues told antibiotics eat got bacteria leaving bad bacteria can’t get a break. I have a great liver dr in San Francisco but sometimes having so many health issues makes me feel worthless. Now I have GERD, PBC, celiac, IBS, divirtercolisis, hiatal hernia. This life I wouldnt wish it on my worst enemy thanks for this page so I can see I’m not alone

[Ktltel]

You have been through it. I'm so sorry. I wish you could find a good functional medicine doctor. They back track and try to help one autoimmune disease at a time. Antibiotics cause ALOT of issues over the long run but, we need them. Please don't lose heart. Slowly things can get better with those other autoimmune diseases. Through diet and getting the right help medically. You can even Google Mark Hyman protocol and get some healthy ideas where to start.

As far as your PBC goes, can you take Ocaliva? I'm sorry, PBC is no picnic alone. Then with everything else it must truly feel overwhelming. Knowledge is power.... Check out Mark Hyman and his way of balancing out the immune system. It's no cure.... but many have felt so much better and have a little life back. ❤

Thinking of you,

Stella

[liver-bird]

So sorry you are suffering at the moment Teri. It's not your fault so please don't let it sap your confidence. I too have lots of different conditions including celiac. Analysing all foods before you can eat gets me down sometimes.

I agree with Stella that with careful diet things can feel better. Thinking of you and wishing you well. Do keep in touch and let us know how you are doing. You are not alone. 😃

[Arlie]

How do you know stage 3

[Teri8672 in reply to Arlie]

3rd liver biopsy

[Arlie in reply to Teri8672]

I can’t get a biopsy cause my platelets run low , but I’ve had PBC since detected in about 1990

[mjk98]

I'm having trouble with URSO it makes me sick nauseous I'm sick of taking medication I'm on the 6mp at the end of the month I have to get another blood test if my numbers don't go down there going to put me back on prednisone I'm thinking about stopping all medicine it's the autoimmune disease that is the problem I'll let the cards fall it's no way to live taking endless medication that is what is depressing me

[mrspeffer]

Good Morning...Seems like lots to deal with. This is overwhelming at best on most days. I was reading that once we get an auto immune disease, it is not surprising to develop others. Ours systems seem to be haywire. I know how devastating getting another diagnosis can be and how exhausting having to be diligent about every aspect of our lives can be. Sounds like you are on a rough patch in your journey....this too will pass.

Yes, antibiotics will kill off good bacteria. That is why taking probiotics to re-establish the gut is recommended. Allopathic doctors are trained to give pills to stop a symptom.... that is what they know. Alternative doctors will give you supplements to build the body up.

It is an unfortunate fact, but we, the patients, seem to be the ones to find the "cure" for our problems. Thank goodness for the internet and the ability to find things to help us out.

Others have suggested diet changes, which is always the first line of action for us.

I had a recent visit to the first Hepatologist for me since diagnosed 20+ years ago. It felt like a time warp and I was back at square one. All I was seeking was a fibroscan because I have not been staged. My LFT's are high and have been for 20 years. Bilirubin is in range. No other major symptoms, just the fatigue, a few aches and pains, etc. I have used ONLY alternative remedies for the course of my disease. What's the first thing out of his mouth??? URSO..which, by the way, I had an allergic reaction to many, many years ago. I felt sucked into the machine! I was ready to try it one more time when I thought, WHY????

I'm doing ok, have been for many years. So I am going to keep finding and using alternative remedies. I read the side effects of URSO, just to refresh memory....nothing I'm interested in dealing with. I have enough to deal with without adding more issues.

So, I take probiotics for gut health, digestive enzymes to help the food digest easier, milk thistle to protect, Liveplex to help things move out of liver. Just found an old list of foods to detox liver...carrots, avocado, spinach, apples, olive oil, green tea, turmeric. Of course the do not eat foods were...salt, msg, artificial sweeteners, fast foods, high fructose corn syrup. Shop the outer isles of the grocery store... Be well, find one thing that brings you peace everyday. I like to write out a gratitude list...puts things in perspective

[Teri8672 in reply to mrspeffer]

I did take probiotics and also ate a lot of yogurt. I go through stages vomiting weak unable to get out of bed. Now I’ve been told I have bone disease my hips are weak my back is weak my left knee is week I was told because of trauma to the fall it came out early arthritis. But bilirubin is stable at .9 so just a waiting game. Thanks for reply to me

[ninjagirlwebb in reply to Teri8672]

I also drink kombucha for probiotics. I ate yogurt also for the calcium. My primary care doctor had put me on antibiotics & suggested replenishing the good bacteria by taking a probiotic supplement. While on antibiotics, should not take probiotics either 2 hours before or 2 hours after the antibiotics as it will render it useless. Also take the probiotic supplements for at least a week after finishing the antibiotics.

You probably need to have the doctor treat the osteoporosis.

Sorry about all you are going through. Just have to take it one day at a time. Take Care!

[KevinHall10_]

Hi Terry, God, reading ur post sounds like a lot of us. It stinks. I just finished putting on some ted hose on, because my legs hurt so bad. I pretty much have the things u listed plus firbromyalgia . I have had the pbc since 2011, dx. In 2015. I go to the gym, some times i get on the tread mill and go for maybe 5 min. An i just cant do it. So i go home. But i tried...lol .Hang in there, i wished i could say it will go away, unfortunately we just need to try to be strong. Sometimes i get so tired of my fake smile. Anymore when i have an episode, i just lye down. Wish u all the best.