severe osteoporosis and op drugs

[Radars]

is there people on here with L5 t12 who don't take any op drugs and take the risks of fractures, when I was dx I was told I must have zoledronic acid infusion to help me followed by prolia, I thought I was doomed unless I had treatment, I asked for another dexa scan before my 2nd infusion on the 25th April, but gp said I wouldn't get it in time before 25th April, if I had a dexa scan and improved I would refuse the 2nd infusion.

[Kitchenbuddy]

I was told I had severe osteoporosis several years ago. I refused the osteoporosis drugs due to digestive issues and possible side effects. So far my biggest complaint is upper back pain and arthritis pain in my joints. I walk several times a day to get my dog out. I personally don't like Any medication but take a low dose of gabapentin at night for pain and it helps me sleep. I take a calcium supplement and a multivitamin daily. I think this works for me, but it is a personal decision.

[Radars in reply to Kitchenbuddy]

I have just recently had a spinal x-ray and the results are that I have arthritis in my lumbar spine, after my first infusion I had to go to a/e at 4am in the morning peeing blood, put me on a drip all night and then sent me home later in the morning with antibiotics that cleared it up, gp said it wouldn't be the infusion, a load of rubbish never had anything like that before, it was a urinary trac infection.i also have a hiatus hernia the infusion was ok for my stomach.

[Kitchenbuddy in reply to Radars]

You have been through a lot. I hope you feel better soon🙏 seems like we manage the best we can at times. Hang in there.

[soppysokes]

I apparently have oesteo spine and hip. Had alendrolic acid for 5 yrs it didnt do very much improving, it gave nasty stomach issue.was then offered infusions but didnt take up the offer.. I stopped that about 12 years ago and take no meds for it. I do supplement a little but nothing else. I have never had a fracture (yet!) and cant say I have noticed any real problems.

[Collywobbles64]

hi radars. My lumber spine is according to a dexa -5. I don’t know what your scores are but I won’t take the drugs as it makes your bones brittle, which at 59 I think would be disastrous for me.

[Radars in reply to Collywobbles64]

people have been on zoledronic acid infusion for 3-5 years then they can come off for a holiday it's knowing when is the right time to come off before starting something else, I have had 1 infusion last April 25th I am due my second this April, I have had 1 dexa scan on October 20,22,my scores were-2.5,4.1 Lumbar spine, bmd at femoral neck 0.593, vfa superior end-plate deformity at t12, so not good.

[Collywobbles64]

apparently it stays in your body for 10 years after you come off it. As I have not had any fractures and am only 59 I won’t take any drugs as it would be the rest of my life. I have changed my diet though. The rheumatologist said that although I am providing the nutrients, my body is not taking them up. All they want is you on their drugs rather than investigating why my body is not using the nutrients. Apparently one lady has had good results with the carnivore way of eating that is also good for ms and hbp. I also have both of these.

[Radars]

yeah thanks, is there anyone who says anything good about zoledronic acid infusion, all I have been reading is negative, what are us people with severe osteoporosis supposed to do, if it stays in your system for 10yrs why not stop after 3yrs,when I had my 1st infusion the nurse said I would be on it for 5 years. this is hard work this lark.