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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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How was your time on Tymlos? They took me off after 4 months because of all the side effects. Especially my B/P going to 205/185 every night after the injection and heart papulations. I would not function very well always fatigued. Never got my garden planted and the plants are on the patio. Now in Jan. will switch me to Prolia. Have any side effects from Prolia yet?
@kilh
Black Box warning is from the FDA warning of potential adverse or life threatening effects from a particular drug.
You can probably find a list online . Doctors should know these before they prescribe. I think each drug has a particular warning. This is in additions to the usual list of potential side effects that you find with every drug and is included in the inserts of a lot of drugs. I get eye injections and checked for this BB warning after I received the first one.
FL Mary
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1 ReactionHi there........my time on Tymlos was quiet and successful. Not even a hint of a side effect. A little tummy upset the first two days but then nothing. And as of today......i have had no side effects from Prolia. I have to wait to make sure it is holding down the fort on the new bone that Tymlos created.
May you be content and have joy.
Chris
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1 ReactionSame situation, basically, with many options for bone strenghtening medications. In my case, in conjunction with AI for breast cancer and bone density concerns. Several months until I need to make a semi-final decision for the course for the next few - or more - years. The more I read, the more I need to learn.
However: 1 simple survey of people of medicare age: anybody have any price info? SURE, price/cost is not foremost in my mind, but I do not have the faintest clue what either of those treatments would cost, and it might sway me toward a combination of less disruptive, less side effects, and the least expensive of those that fit the bill. I know from experience that prescribing physicians as a rule do not have the faintest idea what the drugs that they prescribe actually cost. Oncologist here was more tuned in, but still.........
Again: not looking for the lowest cost of anything, but getting some rough idea what 5 years of drugs (cheap, $ 5.00/30 days as long as I can tolerate the letrozole), but proposed infusions or injections to slow osteoporosis is not easily found.
Cris, how long were you on Tymlos? In the reviews, I have read some have had side effects on Prolia similar to Tymlos? This makes me scared to try and go through what I have in the last 4 months. One of my best friends was put right on Prolia before anything else. Two injections later and no side effects. But in Sept. I have dental surgery so I have to wait 5 months to start on Prolia. Have any opinions on the subject? I am open to any comments. Thanks for your thoughts and reply.
Of all the treatments I have had over the years Tymlos is by far the most expensive one. But the manufacturer does have an assistant program if you qualify. Most of them do if Medicare and insurance do not cover all the expenses. You may still have a co-pay. Your Dr. may help you apply if needed. Hope this helps you a little. Be well and stay safe.
Hi there…..I was on Tymlos for 2 years exactly. I understood that there end of 18 months was the best time for the transfer but I had not made up my mind about Prolia, even though it was my only choice because of severe reactions to Bonniva and the other options. I spent quite a bit of time talking to the medical professionals at Amgen, the manufacturer of Prolia about testing results across the board. Only 10% on average, had serious side effects. I was still worried that I would be in that 10%. The research department was helpful in pushing me over the edge. I also learned what to do if I had immediate side effects with Prolia.
If you would like to connect with Amgen….let me know and I will respond with the direct phone number.
May you be free of suffering and the causes of suffering.
Chris
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2 ReactionsYou can call Tymlos Together (number on their website) and also find the application for the Radius Assist program on the Radius website. I got my Tymlos for free. (But can't take it due to a side effect)
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1 ReactionThank you for sharing the information about the Radius Assist program to help folks with the financial side of Tymlos. I am sorry that you were unable to take advantage of it. Have you found a medication that works for you?
May you be safe, protected, and free from harm.
Chris
I have tried bipohosphanates, Forteo and Tymlos. MD does not want to do Prolia. Evenity is the only one left. Trying to get endo to talk to cardilologist. Don't want to end up on life long blood thinners as a result of a drug. Radius Assist was easy to apply for- just sent taxes- and they send a three day supply with needles, and swabs. Tymlos was easy to inject too.