Pbc and Lupus link

[Buxton26]

Hi, I’ve been diagnosed with pbc for about 5 years now. Just recently I’ve had a positive result for Lupus anticoagulant. Anyone else on here also have Lupus? If so what tests led to diagnosis?

[MarilynCr]

I’ve heard it’s quite common to have multiple autoimmune diseases I have PBC, RA, Raynauds, I’ve had purpura many years ago, plus fibromyalgia, osteoporosis, osteoarthritis etc.

[Alley27 in reply to MarilynCr]

Hi I have AIH and PBC, I also have hashimoto's and now osteoporosis and osteoarthritis...not sure what else is going on but I have had issues with headache and brain fog since Nov 2018.

Could I please ask what treament, if any, you are having cor the osteoporosis. I have seen information about bisphosphates, and so many side effects that I am not sure.

Thanks for any information xx

[gwillistexas in reply to Alley27]

Alley27...I have osteoporosis in the neck of my right femur. Osteopenia in other places. My endocrinologist wanted me to take fosomax. After I researched, I decided not to take it. I’m taking chances by not taking it but I decided to try and help my bones naturally. Too many negatives on fosomax. Some people don’t mind taking the drugs but I’m a little hard headed. In the end, you have to do what’s best for you. Not always an easy decision. Take care. 😊

[Alley27 in reply to gwillistexas]

Thank you gwillistexas. I agree with you completely regarding the fosomax medication. I would also like to try and keep my bones healthy myself but I also don't want to be much worse in a few years time that I end up in a wheelchair and in horrendous pain

I have agreed to see a rheumatologist to discuss options, but I do not want to take any more pills. I also have to think about my digestive issues, I would not want to upset my stomach necessarily.

I understand that there are other treatments available to us but like you say its personal choice. I had a conversation last week while waiting in the hospital waiting room. This lady has osteoporosis and she decided on infusions..I can't remember the brand. She said that at first she refused because of the stories, but then she sat up to get out of bed and felt such a horrible pain. She had three fractures in her spine. So she agreed to the infusions and she said that she is so much better for it.

She said she wouldn't have minded but she did a lot of weight bearing exercise including tap dance, she ate properly and walked everywhere...so because of that conversation, I am considering infusions.

I have a 5 year old grandson so need my bones lolx

[gwillistexas in reply to Alley27]

Hello. I’m scheduled to see my endocrinologist is May and she will not be happy with me. She mentioned if fosomax didn’t work I could try prolea. Not sure how to spell it. I have a friend who is due this start on it but after 2 years there is a risk of bone cancer. So then you have to jump to something else. No win situation in some ways.

[gwillistexas in reply to Alley27]

Do you’re seeing a rheumatologist for your bones?

[Alley27 in reply to gwillistexas]

Yes I am waiting for an appointment. My gp said be would arrange for me. If not I will get my hepatolagist to do it at my next appointment in April. I will take calci d untill then.

[gwillistexas in reply to Alley27]

I didn’t know rheumatologists treated osteoporosis is why I asked. I questioned, to myself, why I saw an endocrinologist because of it. But this endocrinologist seemed like it was part of her field. I know they specialize in the endocrine system and I could understand her treating my thyroid. Interesting. 😊

[ninjagirlwebb in reply to gwillistexas]

The endocrinologist can treat you on the bones...my hepatologist told me that they know a lot more about the bones vs him.

[ninjagirlwebb in reply to ninjagirlwebb]

Endocrinologists specialize in treating and preventing bone loss and preventing fractures. In addition, endocrinologists treat disorders that may affect bones, such as hyperparathyroidism, low and high levels of calcium. Become familiar with osteoporosis risk factors.

[gwillistexas in reply to ninjagirlwebb]

My hep sent me to her so I assumed she treats bones but had only ever seen an endocrinologist about thyroid. Thanks for filling me in. 😊

[gwillistexas in reply to ninjagirlwebb]

Yes, I knew my hep would only treat my liver. 😊

[ninjagirlwebb in reply to gwillistexas]

Yeah...I knew that but was surprised that the endo also treats bones in addition to thyroid.

[gwillistexas in reply to ninjagirlwebb]

Me too. I had no doubt this endocrinologist knew her stuff. 😊

[Alley27 in reply to gwillistexas]

I didn't know an endocrinologist treated osteoporosis and obviously my gp doesn't know about this either...so I will wait and see what happens...I have an appointment in April with my hepatolagist and if I have heard nothing from my gp I will ask my hepatolagist to sort something out for me.

Another matter in everyone's mind is Corona virus...why is it so difficult to get those close to you to wash their hands more around you....am I being over cautious when I keep reminding them to wash hands.

[gwillistexas in reply to Alley27]

Don’t feel bad about asking people to wash hands. People should have enough common sense and respect for others to do so without being reminded. My city is already taking precautions since a man in the Dallas area has been confirmed. Scary times. Take care of yourself. 😊

[ninjagirlwebb in reply to Alley27]

Washing hands frequently is just good hygiene especially in light of these times.

Was at a party this weekend, I told family/friends, no hugs, no handshakes, only fist bumps and then I washed my hands with soap & water directly after. No one was offended. They know my strong feelings about this.

[MissusTee]

I have scleroderma, PBC, sjogrens and hypothyroidism, unfortunately it's all too common to gather several!

[Erinlynn]

Hi - I was diagnosed with PBC and lupus about 10 years ago. I have had very few symptoms from Lupus that don't cross over to PBC. I take hydroxychloriquine daily (in addition to Ursodiol) and that is supposed to help with joint pain. Overall, the impact on my life has felt pretty minimal. I get tired periodically and have joint pain - both of which could be from PBC.

I feel pretty good most days. I work full time I walk daily, and only see my rheumatologist once a year for tests.

I hope this helps - feel free to ask questions if you have them.

Erin

[kingsnorth]

Hi l was diagnosed with lupus and sjogrens around 15 years ago l have been relatively stable but do get the odd days when I’m feeling poorly so l rest. I was diagnosed with PBC by way of biopsy 2 years ago. I take URSO daily. I also take 2mg steroids a week for my lupus. I’m never sure whether it’s lupus or sjogrens playing up when Im feeling unwell. I’m still fairly active and walk most days l have been in Spain for the winter months so easy to do lots of walking. I see my gastro consultant yearly and have 6 monthly blood tests. When I’m in U.K. l try to do gentle weights at the gym. I’m 70 years of age in November.

Best wishes