Osteoporosis and PBC

[Pamela4475]

Hi everybody...I just learned they are going to want to treat my osteoporosis due to postmenopausal and PBC. Is any one here getting treatment for osteoporosis and what is it. I can't find ant data about drugs and its affect on PBC. As usual, worrying myself sick 🤕

[shubb]

yes. first calcium 1500 mg & 800 vit d ( one supplement I take daily), and phosamax starting this week. this was before the ultrasound of liver a couple days ago. I know I need the calcium & vitD. Ive never taken the phosamax , so i dont know how its going to work. as far as how it works with PBC, Idk.. sorry. I also had questions about all other medications I take, and if liver doesnt filter it, etc.. is the pain meds I take going to be a problem as well.. hopefully someone more experience will chime in here..

[Pamela4475 in reply to shubb]

Ok and I will ask my doctor too.... my blood calcium and vit d are within normal but I take vit d supplement no calcium..... are you on any point? I am trying to get off nexium

[Oidra]

I had “something” in January that took a couple of months to get over. One night I coughed and fractured my spine in the lumbar region. My GP said I had oesteoporosis and started me on Alendronic acid which you take once a week on an empty stomach and stand up for half an hour afterwards. With it I have to take a large dose of Vit C every day.

I did check with my PBC specialist and he said he had other patients on it. I have had it now a couple of months with no side effects.

[Pamela4475 in reply to Oidra]

Thanks

[Jaycee]

Hi There, I was diagnosed with Osteoporosis, I have it very badly in my spine, I was given the Alendronic Acid, it didn't agree with me,mucked up my gullet, I was then given Zolendronic Acid, which is a yearly infusion you get for 3 years in a row, I've had my 3 years worth now, no side effects at all, better than all the tabs, I seem to have a thing about taking tabs, if there is a side effect going I will get it. My vit d is fine. I also can't take the tabs for PBC either, my blood tests are all normal, only thing I suffer with is the fatigue, I am on of the lucky one's I think. Stay well.

[Pamela4475 in reply to Jaycee]

Thanks for the info

[Junolee]

Nothing to worry about. I have been on meds 5 years plus. I have improved + 8% on spine and + 6% in hips. Initially I was on tablet once a month, then once a week. This year they changed me to 6 month injections. I have had no side effects as yet anyway. My mother’s family all suffer so I had a predisposition but being vegetarian until my mid 20s, no milk all my life and on steroids for 18 months didn’t help.

[kingsnorth]

Im osteopenic it was picked up in 2013 l take adcal daily and aldrondronic acid (when l remenber) no problems for me

[Ellyne]

I was diagnosed with osteoporosis 20 years ago. I have been on fossamax for 10 years. Take pill on an empty stomach with a glass of water and no laying down for a half hour. No side effects. Then they had me come off of it for 3 or 4 years nd I have been on Prolia. This is a twice a year injection. y osteoporosis improved and I am now in osteopenia. Again, no side effects. I take Ursodiol for PBC and synthroid for my thyroid and no problems.

[DeeSree]

Hi Pamela4475 I too have been told I have osteoporosis. I tried the medicine Fosomax but couldn't take it because of horrible reflux. Doctor said I took it for a month and that might be good enough. I guess it wasn't because a year later they want me to take a shot. I agreed to do that but when I went to get it done they said it was an infusion. No way today, then went home to study about it it all more. I absolutely refused to do it. My dentist said she would not be able to do dental work for me in the future if I did it. I was worried because my vitamin D levels were so low and no matter what I did It would not go up. Began major study to learn more and I learned you do not need Calcium (Calcium made me sick) to absorb Vitamin D but Calcium needs Vitamin D. Began reading about how to improve Vitamin D levels and found information on Magnesium and how we no longer get it in the dirt due to over use of chemicals in our dirt and grasses etc. So after studying about that more I learned most of us are low on magnesium and we need it so bad for all types of thing. Then I began adding it to the 5000 Units a day over the counter liquid sublingual Vitamin D found at our local health food store and then got the recipe and made my own magnesium Chloride spray and use it twice a day on my thighs stomach and arms. I have done that for a few months and this last visit my blood work finally showed my Vitamin D levels up a bit above normal now. My leg and thigh cramping are gone and I feel much better. My doctor still wants me to take at least consider the shot Prolea sp? I am considering but will be doing more and more research to find out what will be the best for me. I still worry about my liver with PBC even though I have very normal LFT and all the other tests for liver since going on Ursodial. Good luck, Hang in there. PS. I had a hysterectomy at 42 so stopped taking hormones too about two years after that.

[Pamela4475 in reply to DeeSree]

They are pushing for treatment.... even my liver doctor but I will have to have something else..... fosamax has been out the longest.... and pbc takes priority so will let you know

[littysgirl in reply to DeeSree]

I get terrible thigh cramping/spasms - mostly at night. I also have low back issues and I suspect that I fall asleep in an odd position which causes the cramps but now I'm curious. How in the world did you create a magnesium chloride spray? And why did you decide to spray it on your skin instead of taking it internally. I'm very interested in this and would appreciate anything you can tell me.

[DeeSree in reply to littysgirl]

Yes, you can buy it already made but I have learned to make my own. It is simple equal parts of mag chloride flakes and distilled water. boil water and dissolve flakes until there are no longer seen. keep in a glass spray bottle (sterilize bottle ) shelf life should be about 5 months. (probably will use it all by then) Put on bottom of feet and thighs. It helps for so many things. Good luck..

[DeeSree]

Good luck what ever you decide! I feel my Vitamin D being up so much from before tells me I am doing something right. I am still considering the shot ( may have the name wrong on the shot because its been so long.

[Pamela4475 in reply to DeeSree]

I am thinking about the subway shot Prolia..... the fosamax injection is intravenous..... 😬

[Pamela4475 in reply to Pamela4475]

That’s subq for subcutaneous.... stupid autocorrect

[Pamela4475]

Well everyone..... ortho doc says no osteoporosis and calcium and vit d ok so hold steady until next scan in a year. I am happy for the good news and thanks everybody for the replies and warm wishes