Connect
Hesitant to begin drug treatment for my osteoporosis
Hello! My first post here as a new member. I am an active 69 year old female who was diagnosed many years ago with osteopenia but now have osteoporosis. When diagnosed with osteopenia I gave several drugs a try. I had side effects from all the oral choices I took, and when giving myself Forteo shots, broke out in hives all over my body. After that, I decided I would take my chances and go the natural route to keep my bones healthy with diet, consistent exercise and Calcium/Vitamin supplements. Fast forward to present time my last bone density scan was worrisome, (a -4,4 T score in my spine). An endocrinologist strongly suggested treatment, (shots or infusions), but I still fear side effects. I am currently trying to educate and empower myself by researching all options. I am already a bit overwhelmed with so many differing opinions. Drugs or no drugs?! The possible serious side effects of drug treatment still frighten me. Has anyone here diagnosed with more advanced osteoporosis, remained fracture free? Am I at such a high risk that I’m doomed without drug treatment? Thank you in advance for any advice, experiences, etc.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
loplady, maybe, Forteo. The endocrinologist I'm seeing (in his wisdom) told me on my last visit that I could stay on Forteo until my T score was -1. I didn't think we could get back to -1 and so consider this a lifetime promise. I would use a month of risidronate and then try to get back on Forteo or Tymlos if promises aren't true or if this doctor retires.
You can’t use other drugs? My dr said we can use Reclast for 3-4 years and then take a drug holiday.
I don't think it's that the pharma industry is being negligent. It's that it isn't an easy problem to solve. The process of building bone is complex because it's a constant cycle of breakdown and renewal. Look at all the drugs that have been approved so far:
Fosamax 1995
Forteo 2002
Reclast 2007
Prolia 2010
Tymlos 2017
Evenity 2019
Also, there is always research going on. For example, they are working on a pill form of a parathyroid drug (currently Tymlos and Forteo, both injectables.) And, they are developing models to determine what sequence of drugs works best for certain patients.
https://www.labiotech.eu/best-biotech/osteoporosis-research/
-
Like -
Helpful -
Hug
2 ReactionsNJX58,You aren't thinking
about the damage done by these medications. You aren't thinking about the fractures suffered because of these medications. the life threatening side effects or the misery of life on some of these drug.
You aren't thinking because age and sex make tell you this is a breeze.
-
Like -
Helpful -
Hug
1 Reactiondon't take calcium without a blood test FIRST! It is dangerous if you already have good calcium in your bloodstream. I was put on calcium twice but taken off after my calcium was tested. Test first. Not everyone needs it.
-
Like -
Helpful -
Hug
3 Reactionsunderstand that your body bones are not all equal. I was pronounced as "out of osteopenia" but the bones they tested on were STRONG. Fast forward to cervical spine surgery and my bones fell apart in their hands. Paperthin. I went on bone meds. FIND A GOOD TEAM to work with. I had to bug my endocrinologist at UC Health but tough bananas. Call around, call the pharmaceutical companies, but your doctors, take only DEXA with TBS Software for standardized tests from year to year. That's a must for accuracy. I had side effects on my first reclast and they should have done things way different. Okay. Next year they will! I went on TYMLOS and there is a 2 month window for systems and "magically" they disappear - and they did. AFTER they started me on low dose and I worked my way up. For ME it was not an option to ignore. 7 women I know fell last year and fractured their bones. I am 68 they were about the same age, a few years older. I don't want that. I'm a clutz and always fall! I WANT strong bones. I eat and exercise but I can't overcome menopause and my ancestry. I did also go on bioidentical HRT too.
-
Like -
Helpful -
Hug
2 ReactionsSo what is your point? *Nobody* should take these drugs?
NJX58, my comment agrees with S1303, the comment you responded to dismissively.
It also agrees with your own comment about not thinking and your previous comment about your testosterone and your age.
If you reread S1303, you'll understand the points I support.
On YouTube look for Osteoporosis Foundation of New Mexico for a seminar with multiple doctors and researchers presenting papers on studies, new drugs, trials. It was posted about 4 months ago. Several different presentations from around the world. Some are very over my head, but others were understandable and helpful. There is one presentation on studies of quitting Prolia. That one was very interesting to me because I’ve been on Prolia for 2 yrs, 4 injections. Based on that presentation if I’m going to try to quit it is don’t go past 2 yrs and the alternative results with newer treatments. One study that intrigued me was reducing the amount of Prolia dosage by 50%, then 25%. , then zero and transition to a biologic. I’m searching for a clinic, osteoporosis or endocrinology that is within travel distance. I live in SE GA and about 1.5 hr drive to Jacksonville, 2.5 hrs to Charleston. Atlanta is over 4 hrs away.
-
Like -
Helpful -
Hug
1 Reactionthanks for the heads up much appreciated