New Here, New PBC Diagnosis - Plus Introduction

[Sharonis]

Hello!

So glad to have found this forum. I'm a 58-year-old woman in North Texas, USA. After seeing liver enzymes rise over 9 months or so, was referred by my cardiologist to a gastroenterologist who ordered blood tests and liver biopsy, all of which confirm PBC.

The best news is that the level of liver damage indicates very early-stage disease. It's also interesting to consider that my demoralizing and mounting fatigue may be attributed to an actually witness-able disease process. I'd been wondering whether it was fibromyalgia creeping along its continuum into Chronic Fatigue Syndrome/Myalgic Encephalopathy.

Don't know about you, but I get so weary sensing skepticism in loved ones and medical professionals! I mean, isn't it enough that I feel terrible? Sarcasm=>Thank goodness I have a degenerative liver disease to prove that I'm really, truly sick! (Where is that sarcastic smile emoticon???)

Started 1,000 mg Ursodiol 8 days ago, 500 am and pm. Itching seems to have localized on my scalp, face, and upper torso, starting late in the day and continuing to bedtime. I already take generic Xyzal for allergies at night (every night of my life, for years), and this seems to take the edge off so I can sleep. Benadryl makes me so, so, so sleepy that I'm afraid to add it to my regimen. I'm already sleeping 7+ hours at night and up to 4 hours during the day.

Still, I'd really love to hear thoughts on increasing antihistamine dosage for itching, especially over and above any dose taken for, say, seasonal allergies. In Texas, seasonal allergies are year-round for some of us.

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Health Profile: No need to read past here unless you're curious... I thought I'd capture this info while I'm focusing...

My diagnoses that seem relevant these days:

1. Primary Raynaud's Phenomena - Diagnosed age 17

2. Diverticulosis/-itis - First episode age 41, resection surgery age 49

3. Fibromyalgia with Chronic Myofascial Pain - diagnosis age 49-50

4. Depression - Starting in mid-20s, off and on since then; currently very much ON (taking Fetzima + Cytomel)

5. Arthritis - First diagnosis mid-teens, ongoing

6. Ascending Thoracic Aortic Aneurysm - 4.5 cm, stable, found age 55

7. GERD - age 45

8. Menopause - 12 years ago, age 47; on HRT for 7 years

9. Lipedema - Suspected; only recently learned about this: webmd.com/women/guide/liped...

10. Primary Biliary Cholangitis - Last but not least! Diagnosed age 58-1/2

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[Michiganpbc]

Glad you got a diagnosis! I went for a few years very ill finally got diagnosed last year PBC on URSO it is working! I would ask your allergist about dosing up with the allergy meds.

[Sharonis in reply to Michiganpbc]

Hi, Michiganpbc-- Thank you for replying and for advice on allergy meds. Glad urso is working for you. Hang in there! Glad to be connected.

[Michiganpbc in reply to Sharonis]

Anytime, enjoy the day!

[Texas-Amy]

Good morning! This forum has been so helpful to me. I'm glad you found it as well!

I was actually relieved to have an actual REAL cause for my fatigue when I got my diagnosis. I've realized most people don't understand that the 'tired' I feel isn't relieved with a nap or a better nights sleep and that's ok.

I'm 44 and was diagnosed in July 2016 with Stage 2 PBC after about 5 years of elevated liver enzymes and unexplainable fatigue. My itching has progressively increased and it's maddening! My doctor prescribed an antihistamine called atarax (generic name is hydroxyzine) for the pruritis. The medication wasn't relieving the itching enough so he added Cholestramine powder which I take twice a day. These medications combined have helped; although not alleviated; the itching. If you haven't tried Cholestramine I would recommend it.

(I'm in North Texas as well!) 😁

[Hbeelovepetal in reply to Texas-Amy]

Hi there,

I've been reading posts on this forum a bit during the last year and have found it very helpful. I am from North Texas as well. I was diagnosed last August 2016 (age 44) with PBC and Fibromyalgia. I, too, have struggled with intense fatigue and of course the pain associated with fibromyalgia. As you put it -- it was -- in a way-- a relief to have an actual diagnosis to explain my near constant fatigue. My doctor started me on Urso twice a day and so far so good! I struggle, as I think we all do, with finding a "new normal" and finding balance with work, home, family, friends, and self care. I wish you well and it was nice today to see two folks from North Texas : ) -- I don't feel quite as alone.

Take care

[Texas-Amy in reply to Hbeelovepetal]

It seems to be a lonely disease doesn't it? I'm sorry you have this but it is nice to not feel stranded on an island all alone 😳🙂

[Sharonis in reply to Texas-Amy]

Amen, Amy.

[Sharonis in reply to Hbeelovepetal]

Good morning, Hbeelovepetal--

So good to hear from another North Texan! That whole "new normal" thing, as you aptly describe it.... Well, I haven't found an inner acceptance of this yet. My feelings are all over the place. Fear/anxiety, frustration/anger, disappointment/sadness.

I used to be the gal who got things done, pushed on through, juggled multiple tasks and truly enjoyed it. Now, if the dog wants petting while I'm reading, well, it feels overwhelming (OK, that's a bit of an exaggeration... ).

Thank you for listening and for sharing your experience. I suppose some of this will even out, but I hate seeing myself as less than reliable, especially because that has been a bugaboo in relationships with others. Karma, perhaps? More corners getting knocked off?

S

[Hbeelovepetal in reply to Sharonis]

Good Morning Sharonis ,

It was nice to hear from you too :)! I understand the feelings all over the place - I think it's perfectly okay to give yourself time to feel those things and work through them. I keep re-working through them myself! Ha ha :).

Take care and I hope we can keep chatting - as Texas Amy put it - so nice to have others to relate to !

Hope your weekend is a good one !

HB

[Sharonis in reply to Texas-Amy]

Hi, Texas-Amy--

Thanks for your suggestions about meds for itching... And especially for your words regarding fatigue. You said it so well... a nap and a good night's sleep don't make hardly a dent. And, YES, it is validating to have a diagnosis that explains the exhaustion.

Looking forward to staying in touch here.

S