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A myPBCteam Member asked a question 💭
Montvale, VA
November 16, 2025
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Answer Summary

Members responding to the question about lower back pain radiating down the legs shared a range of related experiences, including sciatica,... Read more

Members responding to the question about lower back pain radiating down the legs shared a range of related experiences, including sciatica, small nerve neuropathy, and PBC-related osteoporosis as possible causes. Several members described advocating for themselves to get bone density scans, with one member paying out of pocket after being dismissed by their doctor, only to discover severe osteoporosis. A recurring theme was the challenge of managing multiple overlapping conditions while navigating long wait times and doctors who sometimes minimize symptoms.

A myPBCteam Member

Wow, I am glad you advocated for yourself and found out sooner than later. I just booked my bone density scan and it’s in April!! This will be my baseline, or so I thought! Did your doctor give you anything that helps your bones and /or the pain you have been experiencing? I have RA, so curious how you are managing.

November 19, 2025
A myPBCteam Member

Yes I have a low back pain. I am a male close to 60 y/o. I talked to my Doctor about it 3 weeks ago, my Dr. dismissed it. I requested my Dr. to give me a requisition for bone densitometry test, also known as a bone mineral density (BMD), he very hesitantly gave it to me and told me to go to the Local Hospital for the Scan. I called the Local Hospital Imaging Dept and asked them how long is the wait? they told me 2-3 months. Then I called the private pay imaging lab, they told me it will cost me $200.00 and they will do the scan the same day. I went to a Pvt lab, it took them 15 minutes to do the scan. They told me I have severe Osteoporosis. My T scores were over 3.1. Now my diagnosis is PBC and PBC-related severe Osteoporosis. PBC-related Osteoporosis is different than postmenopausal Osteoporosis which is quite common. Bisphosphonates like Alendronate (Fosamax), Risedronate (Actonel) are not that effective or helpful. I called my Dr.'s office after the Scan and I told them about the Scan results. There reaction was interesting. Thanks

November 17, 2025 (edited)
A myPBCteam Member

Yes i do. Have been for a couple years now. I was just diagnosis last Thursday with small nerve neuropathy. It’s not uncommon for people with Sjögren syndrome.

November 16, 2025
A myPBCteam Member

No I don’t have any low back pain or leg issues. Sometimes after sitting awhile I am very stiff when I get up …but moving around it goes away. I have stopped sugars,,bad carbs and adding salt it really helps.

November 16, 2025
A myPBCteam Member

I do have low back pain that radiates down both legs. I really have trouble in the bed while sleeping. I wake up several times every night to reposition and it will stop for a while.

October 10

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