Hello

[Pbcgirl28]

I was dx with PBC in Nov 2016 although I believe I've had it for several years and was misdiagnosed. In September of 2016 I had blood work ran before I had surgery to remove my right ovary and appendix (this was my 8th surgery in the past 6 years) this blood test showed my ast at 406 and alt at 397! I had the normal work up and was negative for all types of hepatitis and then my lfts came back down to normal so we proceeded with the surgery figuring it was just another pancreatitis flare up. Unfortunately it wasn't. After my surgery I was hospitalized for 2 daya. Upon getting home I was unable to keep anything down, which meant I couldnt keep pain or nausea meds down so my husband took me to the er. Blood work showed my ast 981 and alt 1098...(I should mention were I live in Nevada U.S. we have horrible health care where we live in NV so we travel 3 hours to UT. I went to the ER here in NV and was told my LFTS were "slightly" elevated given nausea and pain meds via IV and sent home!) Needless to say my doctor was furious that I was not hospitalized. A few weeks later I was seeing a liver sepicalist at the University of Utah. He ordered more blood work which all indicated PBC. My AMA was 97.2, LFTS still elevated and MRCP showed very dilated bile ducts so I had a liver biopsy (and can I say OUCH! I'm being put to sleep next time! Lol) biopsy showed mild inflammation and that my bile ducts weren't working well but no cirrhosis...

Living with PBC has proven to be diffcult for me. The fatigue at times is very bad. I feel so weighed down and an all over tired. Migraines, horrible itching, body aches and upper right side pain that is so bad I have to take half a Percocet twice a day. I find the Percocet helps give me a little boost of energy as well.

On top of the PBC I also have fibromyalgia, endometriosis, PCOS and PID.

I am on URSO twice a day 300 mg as well as taking Coq-10, fibro-ease, d-rinse and Venlafaxine (to help with never pain).

I am seeing my new liver doc on Monday and hoping to get some more answers.

I was happy to find this site and find others with this disease. Almost everyone I talk to has never heard of PBC including some doctor's.

Regards.

[iagra]

Welcome to the site! Hope your symptoms improve. This is the place where you can ask a lot of questions. I found it very helpful.

Best to you!

[butterflyEi]

Hi Pbcgirl28

Welcome to the group, but sorry that you have to be here. Sadly your story is not uncommon however it is good that with better detection rates PBC is beginning to get some attention and doctors are slowly - very slowly - catching on.

Good luck for Monday hopefully your new liver doctor will be able to give you some clarity.

Let us know how you get on.

best wishes

[GrittyReads]

Welcome to the Group. So glad you finally got a diagnosis and medication, plus I hope things continue to improve, as there are always new medications in the pipeline.

The other conditions you mention seem quite common among those with PBC. Read on the 'PBC Foundation' website too (they host this site, link to their website at top of page - logo - where you will find phone and email contact details for their trained advisors). There is also a lot of info on the site about diet, exercise etc. to help with fatigue - if you join (it's free) you can look at back copies of the magazine 'Bear Facts' where people post tips on the benefits of exercise (despite the fatigue, and helps with it) diet, itch-relief suggestions, etc.

I believe amitriptyline is good for fibromyalgia; I was given it to help sleep, it can be taken in minute doses, and it helped me through other conditions (eg costochondritis).

There is also a site 'Endo UK' here on 'Health Unlocked' where you may find useful help for the endometriosis from other sufferers.

Hope this helps, and take care.

[Michiganpbc]

So sorry that happened to you, mine is a similar story , years of pain and misdiagnosis I am at stage 2 finally diagnosed last year and on URSO having pain still but told there is nothing that can help so I have accepted this and try to enjoy my good days. Hang in there, you are among friends here good people having similar problems which helps.

[Pbcgirl28]

Thank you all! All of the support and information helps a lot. I will check into those sites gritty reads, thank you so very much.

It's hard not to feel alone and helpless at times. Especially when your whole body is hurting and your so tired you feel like you can't even walk (and having a 2 and 5 year old), but this site is very helpful!

Thank you again! Ill post what the docotr says after I get my lab results.