Osteoporosis treatment

[sylviaj]

Hi all, I’ve been told I have bad osteoporosis and was give alendronate and then risedronate both of which caused severe mouth ulcers, I’m due to go back and see my GP next week and wanted to see if anyone else has been given another treatment for this. I’m concerned my Dr won’t know what is best for me given the PBC

[Bobbiesitzman]

What is your T scores? Have you done the 24 hour calcium urine test? What are your Calcium & vitamin D levels?

[sylviaj in reply to Bobbiesitzman]

My t score is -3.5 in the spine and -2.5 in other areas (hips etc) I haven’t done calcium test, what would they show? I’m asking for vit d levels to be done when I see Dr next week but have been taking supplements of calcium and d since PBC diagnosis last year.

[Bobbiesitzman in reply to sylviaj]

My T score is .4-6 I had Kyphoplasty on 3 of my vertebraes 9/21/18 last Friday from compression fractures. The 24 hour test can tell you where you are using / losing your calcium. I was DX in January 2018 with PBC since then I have had 16 compression fractures.

My calcium levels & vitamin D levels were always on the high side. To the point my Hematologists PA told me to stop taking my vitamin D.

I was DX with osteoporosis in March, my Orthopedic surgeon suggested me seeing a Endocrinologist (I highly recommend you see one also) I am currently working with him. My insurance company denied me Forteo which is what my Rheumatologist originally recommended for me. My endocrinologist has me on Fosomax. I see him again on October 5th. I have done 2, 24 hour urine test for him. He is working with me & my NEW Hepatologist they both feel with my T scores and the amount of fractures I have I need to treat my OP more aggressively!! I have been in bed since March!!! I have fractured ribs, by rolling over.

[Ellyne]

I had -3.5 as well. Dr put me on prolia and I have improved . Now I’m at -2.3. It’s an injection every 6 months. Works like a charm.

[Lawyers in reply to Ellyne]

I thought it was infusion and not an injection?

[Bobbiesitzman in reply to Lawyers]

Yes, infusion.

[Ellyne in reply to Lawyers]

Infusion is a different method and is used for cancer patients who have had a lot of bone loss from chemo. It has a different name called recast. The one I got is called prolia. It is an injection in upper arm. Takes 2 seconds.

[Ellyne in reply to Ellyne]

Reclast

[liver-bird]

Hi Sylviaj I too was diagnosed with osteoporosis and took Ibandronate for 8 years. A dexa scan shows I now have osteopenia which is a milder version so I guess the Ibandronate worked and my bones are not do porous. You take one ibandronate tablet just once a month so i am wondering whether this may not cause the same problems for you. I understand you can have a three monthly version and even yearly injections.

I still take calcium and vitamin D every day. Hope this helps. Diane

[Bobbiesitzman]

Fosomax is a tablet you take once a week. I just started my 3rd month of using it. Won't know if it working until March of 2019 when I can have another Dexa scan.

[sylviaj]

Thanks everyone, the bisphosphonates ie: fosomax, Ibandronate, risedronate are what cause the mouth ulcers, so want to avoid them. Prolia is one I hadn’t thought of, so I’ll suggest that to my Gp. I’d like the forteo as that shows evidence of building new bone better than most but it worries me with my liver, so I’ll try the prolia first

[LenaChandler54]

Alendronate was strongly recommended to me 3 years ago when i had mild osteoporosis from PBC. I refused due to the awful side effects and controversial benefits. I increased my weight bearing exercises and intake of calcium rich food and take osteoguard advanced 50plus by Lambeths professional range. Recent dexa showed i am now only osteopenic and ok

[sylviaj in reply to LenaChandler54]

That’s sounds like good advice thank you