Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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

I understand what you mean about new drugs. My Endocrinologist put me on Forteo. It's been around for at least 20 years so I feel fairly comfortable. I believe they all have side effects. Any time a Dr. is working for a company and recommending their product I would want to know why, esp. on a new drug.

REPLY
@lkel

I understand what you mean about new drugs. My Endocrinologist put me on Forteo. It's been around for at least 20 years so I feel fairly comfortable. I believe they all have side effects. Any time a Dr. is working for a company and recommending their product I would want to know why, esp. on a new drug.

Jump to this post

I see you are on Forteo and my endocrinologist is stating I go on that as well how far along are you on the injections and have you experienced any side effects so far, thank you!

REPLY
@lorkay

I see you are on Forteo and my endocrinologist is stating I go on that as well how far along are you on the injections and have you experienced any side effects so far, thank you!

Jump to this post

I get small and sometimes large pains in various parts of my body. My Endocrinologist suggested it could be Forteo and said to let him know if it continues (it is tapering off). Usually the pain don't last long though I had that one kept me awake most of the night. I have been doing Forteo for just about 7 weeks. I read somewhere it's like growing pains.

REPLY
@lorkay

I see you are on Forteo and my endocrinologist is stating I go on that as well how far along are you on the injections and have you experienced any side effects so far, thank you!

Jump to this post

I did the Forteo shots for two years (finished this spring). I found it basically painless and easy to do. I did the shots right before bed, and never noticed any side effects (thank goodness). After two years my bone density increased 12.5% in Spine and 5% in hips. My Endo had me follow up with a Reclast infusion, which I also have tolerated well. So good luck to you, and I hope your results are even better!

REPLY

I am taking Evenity and have terrible, terrible osteoporosis and scoliosis and have had 10 shots 2 shots every month so actually 20 shots and have had NO SIDE EFFECTS NO SIDE EFFECTS. After I take a bone scan I will let you all know my old and new scores. Anyone is welcome to contact me.

REPLY
@jmanj

I did the Forteo shots for two years (finished this spring). I found it basically painless and easy to do. I did the shots right before bed, and never noticed any side effects (thank goodness). After two years my bone density increased 12.5% in Spine and 5% in hips. My Endo had me follow up with a Reclast infusion, which I also have tolerated well. So good luck to you, and I hope your results are even better!

Jump to this post

Thanks so much for sharing your Forteo experience. There are so many members who can benefit when you choose to share your knowledge, even if they do not respond.

Chris

REPLY

@artscaping Very true as also in the osteo treatment decision. Still there as I have had mostly severe, adverse reactions to medications I am filled to overflowing with hesitation. I have heard both sides as to treatment. Without a doubt still in a limbo. Endeavoring to find an Endo doc that is willing to discuss things. Thus far only men who have been impatient and to speak bluntly-are JERKS!!

REPLY
@parus

@artscaping Very true as also in the osteo treatment decision. Still there as I have had mostly severe, adverse reactions to medications I am filled to overflowing with hesitation. I have heard both sides as to treatment. Without a doubt still in a limbo. Endeavoring to find an Endo doc that is willing to discuss things. Thus far only men who have been impatient and to speak bluntly-are JERKS!!

Jump to this post

Try to get Tymlos because the pens have clicks. Full dose is 8 clicks but you can start at 2 and work up. That eliminates a lot of the anxiety about starting a med. Forteo does not have that ability to do a partial dose (unless they have changed the pens since I tried it years ago). I am also really sensitive to meds. I waited too long and had some fractures that were so painful.

REPLY
@parus

@artscaping Very true as also in the osteo treatment decision. Still there as I have had mostly severe, adverse reactions to medications I am filled to overflowing with hesitation. I have heard both sides as to treatment. Without a doubt still in a limbo. Endeavoring to find an Endo doc that is willing to discuss things. Thus far only men who have been impatient and to speak bluntly-are JERKS!!

Jump to this post

Mayo Clinic Jacksonville gave me names of Mayo alumni in my area and I found a terrific endocrinologist.

REPLY
@dermnurse68

Hi
I take the Annual IV Reclast, I am still in the osteopenia and my problem is partly due to the steroids that I was on for 4plus years, this was recommended by my endocrinologist, whom I trust immensely!! It has side effects but it has less than most . I am sure that you have done your research on osteoporosis, but as you age unfortunately it doesn’t get any better, risks of fractures with the slightest movement.
I fell last year going into the building where I worked and broke my sacrum,from a medication that caused severe dizziness ,my Endocrinologist said just don’t fall, I was extremely lucky and it was largely due to the medication I took, and it healed on its own
I hope that this helps

Jump to this post

Absolutely not. Aging along with cancer doesn't help growing old gracefully. But I will be 74 In January and am glad I get up every morning.

REPLY
Please sign in or register to post a reply.