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Struggling with making an osteoporosis treatment decision
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.
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My doc will do a 20% dose of Reclast as a test dose. I talked with Keith McCormick who suggested I continue at that dose, probably every three months.
Some have followed up with alendronate (Fosamax). It is not as potent but still good, I was told. I have terrible GERD and can't take that.
It's tough! I was on cancer meds for 5 years, with side effects, then Tymlos for two years, with side effects, now hoping for Evenity for a year, then Reclast for an unknown period of time.
Side effects have been tolerable and worth it but I do feel my energy level is pretty darn low. I think we would all love to be drug free for awhile! But I am carrying on and wish you luck doing the same,
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7 ReactionsThis is what a Google result showed. The effects are not for a year only for a shorter period of time.
I hope this is correct because I've been told now that I need to take the reclast infusion and I am a very active person. "Showing results for how long do the side effects of reclast infusion last
Search instead for how long do the side effects of reclast fusion last
You might have body aches, fever, or chills after you get your Reclast (zoledronic acid) infusion. Most of these infusion-related side effects happen within the first 3 days after the infusion. They typically go away within 3 days, but can last up to 2 weeks."
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3 ReactionsI’m struggling, too, with a decision. I started back on Forteo (my 2nd year) in March. I did the first year of it in 2019 then switched to Risedronate. My scores were around the -4 mark. I started having a lot of GERD in the last year so decided to go ahead with my 2nd year of Forteo. However, in July/Aug I started having a lot of issues with bloating, stomach/chest cramping, brittle nails. I have also noticed an increase in hair loss??? My endocrinologist then recommended I try Tymlos. It’s been a process getting things switched over with insurance but it’s finally happened. I just have this real feeling if hesitancy to start it. It’s staring at me every time I open the refrigerator.
Anyone have any words of wisdom or thoughts?
Thank you!
The Tymlos pen has clicks to adjust dose. Full dose is 8 clicks. If you are scared, try starting with two clicks and move up. This helped me and others.
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1 ReactionIn addition to the great info on Tymlos sprinkled throughout this forum (and in particular, from @windyshores), maybe consider connecting with a Tymlos clinical educator? (See https://www.tymlos.com or https://www.tymlos.com/resources-support. )
The clinical educator takes time to answer all your questions and concerns, and can walk you through (virtually) your first self-injection. They are very supportive, patient, and understanding, and are there for you. (Forteo, which I'm taking, provides the same service for its patients. I found my the nurse educator immensely helpful.)
I was really apprehensive about doing the self-injections. The first one was the hardest because I really didn't know what to expect with the needle. However, I barely felt it because it's very fine, and sometimes I don't feel it at all. Subsequent self-injections are much easier and quickly become routine.
Best wishes, and remember: you got this! 🙂
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5 ReactionsGood evening @diwint, I see you have been with Connect for about a year. Today you mentioned that GERD has interrupted your osteoporosis medication. I was on Tymlos for two years without any difficulties. So I wish you luck. Let me know if any questions arise. I am here for you.
You may also want to "chat" with @windyshores......she just completed two years of Tymlos. She found the "click" feature to be very helpful.
May you be free of suffering and the causes of suffering.
Chris
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3 ReactionsI am taking Fosamax. I have been taking it for 5 months. So far no side effects. I am terrified of Prolia after reading horrible side effects.
Keep me posted on your progress.
I’ want to be holistic and your info is helpful to me.
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1 ReactionWill do. 😊
Hi GiGix2:
So far, what havevyou been doing holistically?