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Osteoporosis Meds
When you first started medication for Osteoporosis, did your doctor say it was a lifetime journey? Were you aware that after taking a course of meds, it was not over? When I first started, my Rheumatologist convinced me to take Evenity due to a small F1 fracture. He said there were 12 shots. I did do the whole round. But when I first was told about Evenity, and even during the course of the 12 shots, I was never made aware that after finishing Evenity, I would need to continue taking Osteoporosis meds with another drug.
My question is, were you aware when taking a course of drugs that it was just the start and there actually is no real cure for this condition? Yes, I know the drugs are preventative but am just wondering how comprehensive was your understanding and whether this was explained at the very beginning.
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I spoke with 2 Endocrinologist and my Gynecologist who diagnosed me. None of them explained the sequencing of drugs. The only reason I knew was because I joined this support group before my Dr appointments. My Gyno called me and told me I had OP as I was driving home. Told me I could take Prolia which was a shot every 6 months or Evista which he then followed up with that he didn’t have good results with that drug. He ended it with: so which one do you want to do. I said I want to see an Endocrinologist.
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3 ReactionsI have rheumatoid arthritis which makes me a fracture risk, so good bone health is a must. I did a 3 yr infusion of Reclast which really helped. Then in June I twisted my ankle and had a fracture. So,,,I am on Evenity fusions treatment. I was told that after the 12 months I will need to follow up with 1 yr of Reclast.
Thank you for your response. I am aware that it is a lifetime treatment but I am upset because I lost growth that I did achieve on Evenity after the Reclast treatment scan with no explanation as to why and told only one option moving forward was Prolia. I want to regain the improvement I received with Evenity and got pushback on that but I want to be on a drug that does that work. I know of one person who was on Prolia for a very long time and recently suffered a broken leg and was then put back on Forteo. Have you any history about going back on drugs to restore bone loss again before going on or back to a stabilizing drug? I really appreciate the feedback. Alicia
@darby413 thank you for your feedback. I was on 12 months of Evenity and had quite a bit of progress. Then I was on Reclast for three years and just had a scan that showed some of the progress had regressed. My doctor wants to put me on Prolia but that does not grow bone density it stabilizes existing growth, which is my understanding. I want to restore the positive results from Evenity and I am getting push back from my doctor. If you hear of anything about being put back on Evenity or Forteo etc after Reclast treatment and loss of progress and before moving on to Prolia or similar drug I would appreciate your feedback. Alicia
I am in the same boat. I don't think I understood the second drug requirement right away. I was diagnosed with severe OP 2 years ago. I tried to do all non-drug things the first year on my own, and had some progress. Now I'm on Tymlos, 11 months in, with excellent results. I'm told that after 2 years on it, I can't continue, and that I will have to go on a bone saver drug (Tymlos is a builder drug). My mom was on Fosamax, and her jaw was like Swiss cheese. I told my PC that I don't want to take that category of drugs after Tymlos. We are both kinda kicking that can down the road- not worth arguing about it yet. I have a dream that I can get back to normal bone density in the next 13 months, then convince her to allow me to keep up everything (non-drug) that I'm doing now, and Dexa after 6 months to see if I can avoid the next drug. I'm working very hard now to reach that goal, so we'll see. I do expect to do lifetime maintenance as far as diet and exercise. I have gone from severe OP to osteopenia, and worked really hard, so if that first Dexa 6 months after stopping Tymlos shows a loss, I'm sure I will reevaluate follow up drugs. This is a lifetime journey, but it is so much better than many other journeys that people have to take...
@alicia49, there may be a personal history which discourages the use of the parathyroid drugs for. There is nothing in your drug sequencing which would prevent your use. Has your doctor spoken about Tymlos or Forteo? Should you be spending time before July rolls around looking for a doctor who would protect you from Prolia?
@boneoptimist
So true. It’s so easy to feel sorry for yourself. My stepdaughter is 40 years old and has stage 4 colon cancer that has spread to her ovaries. They can’t remove the tumors because she has what they call a frozen pelvis. It’s stage 4 endometriosis. Her female organs are basically all fused together. I can guarantee she would take dealing with OP over what she’s dealing with. So I just keep reminding myself it could be so much worse.
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