Newly diagnosed

[mully]

Hi I've recently been diagnosed with osteoporosis Spine -3.5 I'm 60 and have many autoimmune conditions and have been offered zoledronic acid once yearly infusion If I don't think I can manage the oral bisphosphonates, I already suffer from joint and muscle pain and I feel absolutely terrified of all the drugs but would fear having a fracture if I didn't take them I'm just so terrified of them making the pain worse Is there anyone on here who has similar conditions and how did it affect them Thanks

[Raleigh59]

hi I am 60 years old too

- welcome to a group that we all here wish we did not need.

You will hopefully find answers here or in the American bone health group.

My spine Number is much worse than yours and many here in this group might think that with your number you don’t have to do a yearly infusion, unless you want it. There are many natural options mainly weight bearing exercises. It took me awhile to grasp that my lifetime of daily walking and hiking was not what my bones needed most.

We all think when we get this diagnosis that we are about to fracture.

I was told when I first was in shock about my diagnosis, by a leader of an osteoporosis zoom support group that I go to- “ think of this as a wake up call”

I since have been learning and researching.

You will find your own path through this maze., for example I now go to the gym 5 -6 times per week and lift weights and do the elliptical and never saw myself as that type.

I don’t know about autoimmune part but my sister has many auto immune conditions she won’t talk about but she’s always lifted and been physically much stronger than me and works hard at her job every day. She’s always been overweight which for some people helps their bones be stronger it seems. I think all her natural physical activity at work has helped her . All this being said. If you can implement supplements and weight lifting you will naturally start to heal and strengthen your bones. And regarding the medicine - I didn’t even want to move from a daily to a weekly bisphosphonate bc I did not want too much medicine in me bc of side effects but I survived the weekly and I am looking forward to going back to daily. Regarding bisphosphonates I read higher frequency means better results so daily has higher results than weekly.

I don’t think that holds true for shots and infusions though but I don’t know if the monthly shots have better efficacy than a yearly shot. I do really believe daily shots or daily bisphosphonates are the best route because you get a regular little bit each day and the research indicates this little but each day is best for bones. However because millions of people can’t do daily shots or medicine and compliance is sooooo low the drug companies created an easier option but not necessarily best for both outcome , efficacy and side effects. I read exact research reports and results that show daily bisphosphonates are the absolute best choice for outcome results . I am pretty sure I read that but I did not read that for shots I just think the same results would occur and this is why sooooo many have success with forteo which is my it’s choice plan for now and until the get it , I have a daily bisphosphonate

I think each person is so individual and so the treatment path is also so individual .

Many here don’t like or do any medicine or shots at all because of fear of side effects and many here believe the side effects are worth strengthening their bones. It’s a very personal choice .

[mully in reply to Raleigh59]

Thank you so much for your reply I think I'm probably stuck with the drugs unfortunately as I have limited mobility due to MS and a whole list of other autoimmune conditions which all require medication so taking yet more medication is a stressful thought as I worry about my poor body being overwhelmed with chemicals and my mission has been to remove all but absolutely essential medications

[Raleigh59 in reply to mully]

yes ok you might want to check out strontium citrate which if you take double the amount of calcium for example 500 mgs calcium you can take 250 mgs strontium citrate which is a supplement that was once an osteoporosis medicine but at a lower mgs it’s a supplement . Algaecal explains it all . Even though that’s an expensive program people do say it works or they buy similar products from other companies.

I myself take this Amazon elements algae calcium blend which I believe is working for me.

[Cappuccinobaby]

Please research bisphosphanates fully before agreeing to take them. Some say they can cause bones to become more porous. Also get hyperPARAthyroidism ruled out as a cause of your osteoporosis. It causef mine and now 2 years post surgery i no longet have osteoporosis. Osteopenia but im still a work in progress. Good luck

[mully in reply to Cappuccinobaby]

Hi thank you I am having blood tests for hyperparathyroidism I'm so pleased you are getting a bit better good luck

[Southerngirl2787]

I am 62, had my first fracture last Sept...awful things, T-7. I have had 6 more since then, and each one has been more miserable that the prior. I am now on Tylmos, as the other meds do not impress me, and won't really help at this point. I have autoimmune disease as well, AS is likely a part of this issue, Lupus, Raynaud's and Hashimoto's. I was doing fine until mid 2021, all the doctor mess, and my Gyn NP accidentally lower my bioidentical hormone scripts....one year later is when all my numbers went bad, and the first fracture. Seems face to face doctor visits is really better than video! My doctors are happier with Tymlos than any of the other meds, since it's different, builds bone, doesn't mess with breaking down.