In 2021 I had a Dexa scan because I was having a little back pain, nothing too bad and still working at the time, I was absolutely shocked to be told I had not only went from 5’7” to 5’5” and had 4 compression fractures in upper thoracic area. I was seeing a PA and all he did was send me to a pain clinic for an epidural for pain. That’s it, no see a surgeon, nothing about Osteoporosis, nothing about taking supplements, nope just mild osteopenia. I feel stupid because I trusted him and my primary also didn’t say anything but she did check my A,D,E,K which were all in normal range so I went on with life making no real changes. July last year L-4 fractured,sent home from ER wearing brace no mention of Osteoporosis. Thought I must have worked too hard that day clearing a hey field or something. Oct fractured L-3, Nov L1 and T-12 same time, Jan T-11. During that time I was finally sent to a bone specialist who said it was osteoporosis from the beginning because of the height loss alone and then of course the fractures. Dexa should not have been used as diagnostic. Anyway she started me right away on Tymlos, a daily injection in December and other than the break two weeks later in January I haven’t had anymore. Wish I new what happened to my bones as it doesn’t run in my family anywhere but neither does PBC or any other autoimmune for that matter. I know some bone loss happens with PBC but haven’t heard of anyone having it this bad?
Fragility fractures in spine while mild Ost... - PBC Foundation
Fragility fractures in spine while mild Osteopenia
In retrospect, isn't it amazing that so many professionals didn't even consider that there might be osteoporosis. Osteoporosis is one the most common autoimmune diseases that those with PBC also have. With so many fractures - so sorry you had to go thru all of this.
Sorry to hear about your experience. Hope the treatment has helped you.
I did my first DEXA scan upon pbc diagnosis as per the hepatologist to establish a baseline for future comparisons. I am not of the recommended age for a scan so my primary care doctor never ordered one.
I have osteopenia. I had a bone fracture in the knee from running. But I think it was because I was not running the right way as I was more used to running on a treadmill vs pavement.
But I know weight bearing exercises like walking and strength training will help maintain bone density. That and I take daily calcium supplements.
Just be careful! I now take D3 and a Magnesium supplement at the same time as they work together and get my calcium from diet.
I don't run anymore since it took me 6+ months to get back to a bit of normalcy and then had to learn how to walk up and down the stairs again (via physical therapy) as my knee was so stiff!
I have osteopenia, but have been able to improve my DEXA scan results by doing 10-15 minutes daily yoga, walking 35-45 minutes most days, and by taking calcium, vitamin D and magnesium. Yoga with Kassandra on Youtube has hundreds of free videos. I usually do one of the Ten Minute Morning Yoga videos before breakfast. It loosens up my body and sets me up for a good day. So sorry to hear about your experience!
Talk about some great self care! Good for you.. sounds like you know what works for you and continue to do it on a regular basis. You are right about so many utubes videos. I like the chair yoga ones - easy on my knees yet get a good workout.
osteoporosis is a common combination withPBC
The exact medical reasons for this are not fully understood at this time, but it can take aggressive management to prevent increasing osteoporosis scores.
Weight bearing (weight training, walking on heart surfaces, and tennis are some of the best exercises to try to rebuild density.)
Absolutely it is a very common autoimmune disease that accompanies PBC. This is why it is so important for every woman, especially with any liver disease, to have a DEXA scan. So simple to do but provides information vital for our health. Thanks for suggestions to maintain bone health.
Keep in mind my fractures happened even though only mild Osteopenia! Not trying to scare anyone as I seem to be quite rare 🥰 I found an interesting article by typing the keywords Osteoporosis and PBC PubMed, it suggests it’s driven primarily by decreased bone formation, which differs from the increased bone resorption seen in post menopausal osteoporosis. In other words our bones slow down on new bone growth while still shedding old bone.
Happy Outcome
Bone Density Scan
Just Diagnosed
Elevated ALT at 65 u/l
Shaking and joint pain.
