Hi

[Alley27]

Hi, I have just been diagnosed with osteoporosis. I am age 55 and have other conditions as well.

I have autoimmune hepatitis overlap primary biliary cholengitis, diagnosed 2011, hashimoto's thyroiditis diagnosed 2011, Asthma since childhood and last year diagnosed with hyper mobility syndrome and osteo arthritis.

A lot for anyone to live with then had a dexa scan in January 2020 and result is osteoporosis....I did not expect this at all however, my go insists its linked to the autoimmune liver disease and the steroids that are given long term to control the immune system attacks on the liver.

I am.not on any treatment yet, I still need to get an appointment with my gp to discuss that however, I do not want any more pills because I take enough already and I have developed a really sensitive gut.

I have taken calci d throughout my autoimmune liver journey, my job which I can't do anymore was physical, I walk everywhere and swim, I carry when I can because the autoimmune liver disease causes more problems than I can write here..so basically I don't understand.

Any help or information would be appreciated.

Thank you.

[Nanaedake]

I think it's always worth getting a print out of your DEXA scan report as it can help you to understand how much osteoporosis you have. Then discuss with GP or ask them to explain. You can then consider risks v. benefits.

[Alley27 in reply to Nanaedake]

Thank you for your reply. I am so concerned about the fact that biphosphates are bad for us. I have serious autoimmune liver problems, I am taking so much medication including current steroid treatment. I don't want to take any more pills as my acid reflux is bad enough. I also have to be careful about what medication I take because of passage through the liver. It's going to be difficult.

One positive thing is that my consultant will have to take me off the steroids now and find me something else to suppress my immune system. There are options but the last medication they tried me on did not agree with me. I could see about HRT...I don't mind trying that but anything else will be difficult.

I will update as things progress and thank you for your help x

[Alley27 in reply to Nanaedake]

Hi, I went to see my gp today to discuss my osteoporosis and available treatments. He explained that my osteoporosis is 2.7, not sure exactly. That it is in my spine. He asked what I know about the available treatments. I told him that I have been doing research and for now, until I see someone who can explain more, the answer is no to the bisphospate.

He is arranging for me to see rheumatologist who will be able to answer any questions I have, and because of my liver situation, it's far better to see a consultant who can liaise with my hepatolagist consultant on site.

We discussed the option of HRT and I am now on HRT patches to protect my bones a little bit. The problem is that since Brexit its becoming difficult to obtain HRT patches as well as essential medicines. Azathioprine is another that is difficult.

I was also told before any treatment I should visit a dentist and have a check up. I can't afford the dentist and I need some work. I have q filling that fell out 4 weeks ago and a tooth that is broken but I will have to get that sorted in hospital. Again, it's steroids and osteoporosis that caused my tooth to break.

I am just carrying on, it is what it is, and I will cope, I always do, We always do, take care xx

[Fruitandnutcase in reply to Alley27]

Gosh, poor you. I had a DEXA scan on Wednesday and heard yesterday that I’ve got osteoporosis.

About your teeth, is there a dental hospital or a dental department in the hospital knew you were you could be seen. I think dental students under supervision treat patients free of charge. It’s a good service if you can get it.

[lovemyyorkie]

you might want to also check out osteoporosis natural remedies group on facebook there is a lot on fixing gut health naturally.Douglas Johnson gives a lot of good advice he has researched it