Osteoporosis, Paratheyroidectomy and drug choices

Posted by whimsical at one time @alyssacorona, 5 days ago

Hi All,
I am new to this forum and would like some feedback to see if anyone has undergone the issues I am having.

I am 59, and was diagnosed with severe osteoporosis almost 2 years ago. Since then, I have had a parathyroidectomy which needed to be done before any treatment started. I went on Forteo, which caused major depression and dizziness so I stopped after a few months. Then started Fosamax which triggered hip pain and within a few months stopped that. The pain still persists and now believed to be arthritis.I was a runner, but no longer am because of the pain. But I am able to continue to lift weights and exercise on a daily basis for about 1 hour a day. That has helped the pain and I do believe at some point, I will run again, but not in the same vain. I have also switched my diet to be healthier and taking the recommended vitamins/supplements for the osteoporosis.

Additionally, I have a S-curve scoliosis, found at age 14, which has become much more curved with my age. And may be linked with the hip pain, but that started literally a few weeks of starting Fosamax.

I may/maynot wait for the 2 year mark to see what my bone density test say, as I am not a big fan of taking any drugs, much less with the side effects I have and may encounter.

I generally do not tolerate any medication in full doses well, which I believe may be the culprit to why both Forteo and Fosamax did not work. I have always taken 1/2 doses of what doctors have prescribed and that seems to work in all cases thus far.

Any suggestions given all of the above? On what to try next?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

laura1970 | @laura1970 | 5 days ago

Has your hip pain been evaluated?

brendammc | @brendammc | 4 days ago

Oh my that sounds like me. Can’t take full doses. Only one alendronate pill and 2 weeks later still dealing with nighttime reflux . I’m also wondering if you do not handle vaccines well. For example I have nausea for a few days after flu and Covid vaccines etc. Friends who have no issues taking OP drugs also never have issues with vaccine side effects. I’m very curious about this.

whimsical at one time | @alyssacorona | 4 days ago

In reply to @laura1970 "Has your hip pain been evaluated?" + (show)

Yes, the doctors are saying it’s osteoarthritis.

whimsical at one time | @alyssacorona | 4 days ago

In reply to @brendammc "Oh my that sounds like me. Can’t take full doses. Only one alendronate pill and 2..." + (show)

I’ve been able to handle vaccines OK, although I don’t take them regularly.

cindyward. Cynthia D Ward | @cindyward | 3 days ago

Hello!
I had a few weeks ago started to look to this website to see if I might find any helpful answers. It's difficult since we are all different, needless to say. I am in a few months 85 yrs of age - past 13 yrs had Rheumatoid Arthritis
and somehow beat that + now it's osteoporosis and osteoarthritis in a big way upper body add on found to need a hip replacement. Now question of RX for " and am fighting the idea of them. Hoping exercises - in my case the weather plays a role as well, worst summer here in CA - cold + damp. Am constantly wondering how it is so little has been done to bring forward some medications to ease pain - except for Tylenol, am given nothing. Am hard pressed not to think of age, being old...being a factor. Health care system is so broken as well. Will hope for you that your positive thinking will be biggest factor in getting better. Mediation also I know, helps. My best wishes !

markmark007 | @markmark007 | 2 days ago

Are you seeing a specialist in a dedicated osteoporosis center ?

whimsical at one time | @alyssacorona | 2 days ago

In reply to @markmark007 "Are you seeing a specialist in a dedicated osteoporosis center ?" + (show)

Yes, I have seen 2 endocrinologists, as one left the practice. I go back to talk through drug options. I have seen a physical & occupational therapist for exercises and help with hip/joint/arthritic pain.

daisy17 | @daisy17 | 2 days ago

I am in a similar situation, except I had parathyroid surgery and my surgeon, who specializes in endocrinology, couldn't find the "bad" parathyroid. I am now seeing another highly regarded endocrine doctor to try and find some answers.

In the meantime, I am not taking any osteoporosis drugs though my Dr has recommended generic Fosamax. I am taking a Fortibone collagen supplement daily, by AlgaeCal (purchased on Amazon). There are studies showing increased BMD after taking it for 4 years; To find the studies results by the National Library of Medicine, search under these titles:
2011: Specific Bioactive Collagen Peptides in Osteopenia and Osteoporosis: Long-Term Observation in Postmenopausal Women
2021: Specific Bioactive Collagen Peptides in Osteopenia and Osteoporosis: Long-Term Observation in Postmenopausal Women