New to PBC group

[Lorelle09]

Hi All,

Sorry about the long story but here it goes. I am a 49 year old female.

My story starts with feeling sick for many years with hair loss, fatigue, brain fog, lightheadedness, vertigo, muscle and joint pains, headaches, nausea, I could go on and on. I live on the Big Island of Hawaii so autoimmune disease is probably not to common for doctors here. I googled my symptoms I asked to be tested for Lupus or any autoimmune blood test and my pcp said you don’t have Autoimmune disease. Fast forward about 5-6 years later I finally find a doctor to test my ANA and it is 1:160 anything over 1:40 is positive. He says maybe you have Lupus and says I have to see a Rheumatologist. Well none on my island so I travel to Oahu and he does a multitude of tests. I turn up positive for anti centromere, AMA M2, anti dsna ab, but negative AMA. Rheumy says I have Mixed connective tissue disease. Later changed it to Lupis and monitors me for scleroderma since I have Raynauds and telangiectasias. He says the M2 is out of his league so I have to see a Hepatologist. At that time 2015 there was only one in Hawaii on Oahu and he had a 3-4 month waiting list. So I traveled to UCLA two weeks later to see Dr. Sammy Saab. He said no evidence of disease. We will monitor. Every three months LFT labs and once a year ultrasound. I saw him the next two years. All was good for the last 6 years.

I also went to Johns Hopkins Sept 2015 and they ran more blood tests nothing else was positive besides the initial tests ran. I also was seeing Dr Wallace for Lupus in California but have not seen him since 2017.

On 2/2/21 my labs were good. On 4/1/21 my ast, alt, esr, and eosinophils were mildly elevated. Also looked like my AP was rising cause it’s usually 50 and was at 90 still normal but going up. eGFR has also been decreasing since June of last year from 90 to 66 sometimes 77 it varies right now at 66. Today I take another blood test LFTs and CBC. I have also always had issues with either low iron, ferritin, those are normal right now but my iron saturation has been low for months.

The medications I take are 300mg plaquenil, 200mg benlysta shots once per week for Lupus, started taking iron again 65mg per day, milk thistle, fish oil. Amlodipine 5mg hypertension.

Reason I was seeing docs so frequently recently was due to abdominal pains in August and again since January. I also had some back pain upper right mostly, upper abdominal bloating, some nausea, lower abdominal and lower back pain, and extra fatigued. I also noticed my back would itch every night for about a month but not too bad. Frequent urination but I’ve had that problem since 2014. Some changes in my bowel habits. At first my pcp though GERD since I do suffer from it. But once my LFTs raised I got nervous. He didn’t seem to be but I know my body.

I always have fatigue because of Lupus but this was worse. Did abdominal ultrasound last August which was normal. Did pelvic ultrasound in August which was normal. Did CT in Feb which was normal. But I’m seeing a new gastro on Oahu and he has scheduled me for colonoscopy, endoscopy, more bloods today and another ultrasound next Wednesday. I am also going back to Dr. Saab on May 13 after not having seen him since Oct 2017.

I forgot to mention I also went into peri menopause 2015 around same time I was diagnosed with Lupus so I was taking birth control pills since then. I stopped the pills on March 9 of this year and since then I have been getting mild night sweats I don’t know if it is from stopping the pill or my liver so frustrating.

I am slightly overweight at 5’2” now 138lbs since I lost 10lbs. Since 2015 I went from 115 to 148 lbs now working my way back down hopefully.

I also think sometimes that in 2015 it was PBC all along and they should have just biopsied me? I don’t know I have a lot of anxiety. I lost 10 lbs in April alone. I have always ate a pretty good diet since 2015. Yes I strayed from it the last couple of years but since 4/1 been on a vegan diet and barely eating probably due to my anxiety.

I am so scared. I know it’s not normal for my LFTs to be elevated. I pray it has nothing to do with C. I’m also scared of PBC. I mean I knew from 2015 that I could possibly get it one day but six years went by and I thought I was in the clear. I have one daughter and am her only parent. My son in law has no parents so I am his only parent. Now I have a grandson. I want to be around for them they along with my husband who I deeply adore but he has no children so he doesn’t quite know how to be a parent to mine. I know he loves her but it’s just different whatever the case they are my whole world.

I am praying for the best results possible. I am glad for this group as I get to learn and hear about others journeys.

Thank you,

Shayn

[ninjagirlwebb]

I dont think it is C because if it were your cbc panel would likely be abnormal.

My hepatologist would tell you this. If it is pbc, you dont need to worry as it is a slow progressing condition. If caught early enough, and you respond to urso, your life expectancy is the same as the general population. You just need to take the meds and be monitored.

I think I had pbc for a few years before the doctors suspected something was amiss. Once diagnosed, was put on urso right away and I see my hepatologist quarterly. I leave the worrying to him and he is always available to address my concerns.

Don’t worry too much. Get a good doctor and let the him/her do their job and you live your life and enjoy it with your family.

[Lorelle09 in reply to ninjagirlwebb]

Thank you so much for your positive words and advice!

[Lorelle09 in reply to ninjagirlwebb]

Hi ninja girl,I have a question would PBC affect your kidney function? Or do you think thats a separate issue?

[ninjagirlwebb in reply to Lorelle09]

PBC is a liver condition. Would not have impact on kidney.

[PBCCarol in reply to ninjagirlwebb]

Actually in later stages can affect kidneys- I had cirrhosis for 24 years when it affected my and led me to transplant May 6. Hope to leave hospital this week. As always remember everyone’s journey is based on their personal health issues so yours will be your own

[ninjagirlwebb in reply to PBCCarol]

Yes...cirrhosis likely causes a host of issues on other organs. Think Lorelle is still in early stages of possible pbc.

Sorry to hear about your experiences, but happy you had a transplant. I wish you a speedy recovery and good health going forward.

Take Care of yourself.

[rderezin]

Sorry to hear about all you issues but as you know autoimmune diseases are hard to determine and different types generally run in families...my mom had systemic lupus I have PBC ...10 years of bad labs before they found it...but great news is there are drugs available.. I have had it for 28 years ...a year after we had a drug ....live your life....Enjoy each day...take it easy on bad days ...you can always see folks who have it so much worse. Enjoy your family and friends and you do live in paradise 💜

[Lorelle09 in reply to rderezin]

I’m glad I joined this site you are all so positive. I needed that. Thank you.

[Stub007]

I am an 82 year old male diagnosed with Stsge 3 PBC in February 2019. I started on Ursodiol, and my labs returned to normal and have remained so. Today I took a 10 mile bike ride and totally enjoyed it. My most obvious symptom is itching, for which I take hydroxyzine HCL three times daily. According to the Global PBC calculation, my life expectancy is not affected by the PBC. All the best,

Don

[Lorelle09 in reply to Stub007]

Glad to hear you are doing well! I am inspired to change my thinking because of your story and be more positive.

[OdinsMom]

First keep in mind that there are other reason for ALP to increase like menopause. Yours is still within normal. AST and ALT fluctuate as well and need to, I believe, 2-4 times normal. Don’t know what your AMA M2 was but it also needs to be significantly high. There’s a published paper on the criteria for diagnosis on the web. Doesn’t really sound like your numbers even now support the diagnosis. They are doing LFTs every 6 months and if the trend goes that way I’d expect them to start urso and/or do the biopsy. Stress can speed up processes, especially AI and that’s my heps opinion too. Deep breathe and enjoy your family. PBC is a very slow disease

[KevinHall10_]

thank you. It is a relif not to know, im not crazy. I oftenfeel yecky and of course its the pbc. I sometimes just feel so bad because i feel so bad all the time.