1. < Osteoporosis & Bone Health

New to Osteporosis: Questions, support and tips

Posted by drcvs @drcvs, Apr 21, 2023

Good morning everyone! This is my first post. I was diagnosed with osteoporosis about a year ago and my bone density test changed from 2 to 3.2. I have no medication that I am taking, but my doctor is going to put me on some thing once a month. Also recommend 1000 MG of vitamin D and 1000 MG of calcium. I’m a cancer survivor x2, and have fought for my health and active lifestyle which revolves around horses. I’ve been warned to quit riding and I spiraled into depression. One fall and back will break. I plan to ride at least one more year, but am I being totally stupid? I’ve ridden my entire life, it’s as natural to me as anything. I quit galloping a few years ago but still ride and camp on the Pacific Crest Trail. I’ve finished CA, and started Oregon. Should I let go of it now or wait a year or? Thanks everyone, it sure helps to have support here. I wish all of you well!!

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

mspatart | @mspatart | Apr 25, 2023
In reply to @mspatart "Thank you for that information. I too have vitamin D deficiency and I live in California...." + (show)
@mspatart

Thank you for that information. I too have vitamin D deficiency and I live in California. I grew up in Minnesota where everyone had vitamin D problems. I remember I had to take cod liver oil as a kid which is a natural source of vitamin D. I am going to start that again, and I found one online that should not taste as bad so am sending that info.
https://www.vitacost.com/nordic-naturals-arctic-d-cod-liver-oil-lemon-8-fl-oz

Jump to this post

Thank you!

REPLY
bettersleep68 | @bettersleep68 | Apr 26, 2023

My opinion is that our bones developed osteoporosis from heridiaty or result of menopause which neither can be controlled...eating a good diet is important but I do not think it will build new bones..only help maintain what we have...the supplements will not build new bone...as far as the osteoporosis drugs ..they make your bones heavier and dexa improves. ..but when you stop them you lose the improvement..I have maintained by dexa scores over the last four years with supplements etc...no new bone growth....what is your opinion..I would like to know how you are doing with your journey

REPLY
1 reply
mspatart | @mspatart | Apr 26, 2023
In reply to @bettersleep68 "My opinion is that our bones developed osteoporosis from heridiaty or result of menopause which neither..." + (show)
@bettersleep68

My opinion is that our bones developed osteoporosis from heridiaty or result of menopause which neither can be controlled...eating a good diet is important but I do not think it will build new bones..only help maintain what we have...the supplements will not build new bone...as far as the osteoporosis drugs ..they make your bones heavier and dexa improves. ..but when you stop them you lose the improvement..I have maintained by dexa scores over the last four years with supplements etc...no new bone growth....what is your opinion..I would like to know how you are doing with your journey

Jump to this post

I just started Forteo which is giving me side effects but I have no choice for now. However, I have a friend who has used a supplement he puts in a smoothy daily which he credits for keeping his bone density in good shape in spite of taking massive doses of steroids for years. I am using it myself now so hope it will help preserve any improvements after I stop Forteo. This is the link:
https://smile.amazon.com/MRM-Nutrition-Maximizer-antibiotic-Gluten-Free/dp/B07DRTRVCZ?content-id=amzn1.sym.deffa092-2e99-4e9f-b814-0d71c40b24af&psc=1&ref_=pd_bap_d_grid_rp_0_1_t

REPLY
2 replies
bettersleep68 | @bettersleep68 | Apr 26, 2023
In reply to @mspatart "I just started Forteo which is giving me side effects but I have no choice for..." + (show)
@mspatart

I just started Forteo which is giving me side effects but I have no choice for now. However, I have a friend who has used a supplement he puts in a smoothy daily which he credits for keeping his bone density in good shape in spite of taking massive doses of steroids for years. I am using it myself now so hope it will help preserve any improvements after I stop Forteo. This is the link:
https://smile.amazon.com/MRM-Nutrition-Maximizer-antibiotic-Gluten-Free/dp/B07DRTRVCZ?content-id=amzn1.sym.deffa092-2e99-4e9f-b814-0d71c40b24af&psc=1&ref_=pd_bap_d_grid_rp_0_1_t

Jump to this post

Thank you for the information

REPLY
windyshores | @windyshores | Apr 26, 2023

@bettersleep68 I don't believe you lose gains after all drug regimens, but certainly after Prolia. I was told we need to be monitored after bone builders followed by Reclast... so I guess I will see!

@mspatart I could not tolerate Forteo and tried Tymlos because I could start at a low dose and ramp up 🙂 I have been on it 18 months and my DEXA looks so much better! Forteo may help a lot too if you can tolerate it.

REPLY
1 reply
mspatart | @mspatart | Apr 26, 2023
In reply to @windyshores "@bettersleep68 I don't believe you lose gains after all drug regimens, but certainly after Prolia. I..." + (show)
@windyshores

@bettersleep68 I don't believe you lose gains after all drug regimens, but certainly after Prolia. I was told we need to be monitored after bone builders followed by Reclast... so I guess I will see!

@mspatart I could not tolerate Forteo and tried Tymlos because I could start at a low dose and ramp up 🙂 I have been on it 18 months and my DEXA looks so much better! Forteo may help a lot too if you can tolerate it.

Jump to this post

Thank you so much for this information. I have not found any similar drugs that could be ramped up. Knowing that Tymlos is one, I will have an option if I can't keep taking Forteo. The results with Forteo are reported to be good but I was afraid there was no alternative if I can't tolerate it.

Right now I reduced the dose to every other day and so far that is ok but I don't know what the results will be and there are no studies except on rats to verify the efficacy of that dosage.

Do you have to pay and arm and a leg for Tymlos? Forteo was $1400 copay monthly. I got Lilly to send me free meds. If Tymlos is as expensive I guess I could inquire about getting it free from the manufacturer as well.

REPLY
1 reply
windyshores | @windyshores | Apr 26, 2023
In reply to @mspatart "Thank you so much for this information. I have not found any similar drugs that could..." + (show)
@mspatart

Thank you so much for this information. I have not found any similar drugs that could be ramped up. Knowing that Tymlos is one, I will have an option if I can't keep taking Forteo. The results with Forteo are reported to be good but I was afraid there was no alternative if I can't tolerate it.

Right now I reduced the dose to every other day and so far that is ok but I don't know what the results will be and there are no studies except on rats to verify the efficacy of that dosage.

Do you have to pay and arm and a leg for Tymlos? Forteo was $1400 copay monthly. I got Lilly to send me free meds. If Tymlos is as expensive I guess I could inquire about getting it free from the manufacturer as well.

Jump to this post

Tymlos has a patient assistance program too. I got mine for free. You call Together with Tymlos (it is online) and they coordinate it.

I never took a full dose but I had unbelievable gains from Tymlos. Tymlos and Forteo are a little different in how they work but they both use the parathyroid pathway.

Have you asked your doctor about whether taking Forteo alternate days is effective? I looked it up and the half life is short, only one hour. Maybe it's fine. It would help to know!

REPLY
1 reply
mspatart | @mspatart | Apr 28, 2023
In reply to @windyshores "Tymlos has a patient assistance program too. I got mine for free. You call Together with..." + (show)
@windyshores

Tymlos has a patient assistance program too. I got mine for free. You call Together with Tymlos (it is online) and they coordinate it.

I never took a full dose but I had unbelievable gains from Tymlos. Tymlos and Forteo are a little different in how they work but they both use the parathyroid pathway.

Have you asked your doctor about whether taking Forteo alternate days is effective? I looked it up and the half life is short, only one hour. Maybe it's fine. It would help to know!

Jump to this post

Thank you so much. I am so grateful for the info. I will talk to my doctor about Tymlos and will discuss the patient assistance program. I am doing ok now with only every other day on Forteo but that dose may not be effective so if I need to switch Tymlos it is.

REPLY
dianestanley | @dianestanley | May 1, 2023
In reply to @sarahstuart "Well Jennifer, you reached out and I have one of one thousand answers: Water Exercise! Harvard..." + (show)
@sarahstuart

Well Jennifer, you reached out and I have one of one thousand answers: Water Exercise! Harvard Medical recently published a paper about the benefits of exercising in the water with two leading the list: first exercise in the water helps preserve your joints; and, water resistance doesn't hurt and does build muscle.

Jump to this post

I have been doing water therapy at the YMCA in their therapy pool. I can't stand over 4-5 minutes at a time but can stay 45 mins in the pool.

REPLY
1 reply
sarahstuart Sarah Stuart McIlvain | @sarahstuart | May 1, 2023
In reply to @dianestanley "I have been doing water therapy at the YMCA in their therapy pool. I can't stand..." + (show)
@dianestanley

I have been doing water therapy at the YMCA in their therapy pool. I can't stand over 4-5 minutes at a time but can stay 45 mins in the pool.

Jump to this post

Jennifer
I don't have a clue what water therapy is today, but I do know something about water exercise. Do you have access to water weights? a water belt? and/or a styrofoam tube? If so, I can suggest some exercises that make me feel good. My only credential is course taking. I am a retired competitive swimmer and gave up lap swimming due to injuries on land to improve the timing of flip turns. Sarahstuart

REPLY
View MoreView Less
Please sign in or register to post a reply.