I am afraid of trying Tymlos and other drugs due to side effects

I feel we have to agree to disagree or maybe we are talking at cross-purposes. I truly believe that there is no validity to the assumption that success is directly associated with severity of reaction. That would mean that those who go through treatment with minimal or no adverse reactions would benefit far less that those who end up in an ER in debilitating pain. I would like to see some study documenting that. I doubt there is one. Each of us are individuals and react differently and have to decide for ourselves what is acceptable if we do have a reaction.

Hey there so glad I found this forum. I am supposed to start Tymlos next week. I have read all the information about side effects. The most common I am told are dizziness, nausea, headache, tachycardia, fatigue, upper stomach pain and vertigo. I do realize that every one is different and some may have one thing and someone else have another. This is my question for the people that have been on Tymlos for a year or longer have these side effects continued throughout the duration of treatment or did they go away after a while. Thanks so much for your input.

(read to the end - there is a test I found for you).
We can when we get to an impasse. I'd rather come to an understanding before walking away. So much to be learned for others.
First, let me ask - we are just talking about these particular medications, yes?
I want be sure you don't think I mean all others or in general! Additionally, if we are talking about these specific meds, I am passing along what the UCSD Endocrinology dept. stated about my horrid Reclast reaction THEY SAID was because the medication was stimulating my bones to produce what it was not doing on its own. This makes sense to ME because like I said about my hep C meds did the same and I had a relative on life-saving bone marrow stimulation medication which also was painful and did the same. So yes, it definitely could mean that those who don't end up in the hospital "benefit far less" (did you see my test results? they are amazing!) but it also could mean that others don't have the particular "need." So my DEXA was all osteopenia then normal - and when they opened me up they found C5 fell apart in their hands! So, who's to say who is in particular need, what "benefit" may mean and who even knows what the reality is with our bones until falling or surgery.
Here is a case in point filed with the NIH which does claim adverse sudden events are reported in the FIRST infusion:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9754987/
I can tell you that my 25 years of severe lumbar back pain for which I take low dose percocet is changing! I've informed my doctor. There is one morning this week I skipped a dose. Today I skipped a dose in the afternoon. I am so tired of bone pain and the humiliation of taking opioids, I could die, so this is a big thing for me. Important things that SHOULD HAVE been implemented with my first dose but were entirely neglected! I should have been informed to drink water to hydrate and start Tylenol to keep fever/aches/pains down. (I did that with the Hep C med protocol.) We will discuss doing a lower dose when time to repeat. I get overmedicated quickly. These things aren't moderated for size - its one dose size fits all. They didn't check my D level and Calcium levels before infusion (but maybe they looked in my chart without me knowing) but I doubt it. I made them give me the tests, subsequently.

UCSD is a gold standard as a teaching hospital. The medicine has been around for a decade or more. I felt like I was a pain in the ass with my questioning and complaints. We didn't know if my problems stemmed from doing the infusion too close to a major double surgery.

Here's the thing - there are so many circumstances that could cause debilitating pain and difficulty. Can they be corrected so you can have a non-event infusion next time? The Endo team thinks my problems can be mitigated. I'm disappointed they didn't prepare me properly. Did you receive the preparation information?
I have 2 years on the Tymlos before I would go back for the 3 infusions and then be done. So I have breathing time. Oh - also - a lower dosage was suggested. but I am an overachiever and I will probably try once more at full dose UNLESS there are reports that lower dosage gets results.
I totally agree with your last sentence. I live by myself. It's all a hardship. I am only 67 and my bones needed replacement (two hips, lumbar and cervical.) THAT has all been suffering. So its an imperative for ME to stave off the ongoing destruction going on inside my body.
Finally, your sentence about hospitals, adverse reactions, and who benefits or doesn't isn't what I suggested. "Benefits," "suffering," "who" needs these medicines are not something I can speak to. Reclast is a "promise" of future independence, health, and less suffering. I've read all the literature I can get my hands on. I am rolling the dice. Its a risk either way.
OH HEY! if you read this far you are in luck! Here's a test that looked at the adverse reactions over first, second, third year!
"APRs were observed in 10.81% (152/1406) overall. The incidence rate of APR was 10.31, 1.01, and 0.55% after the first, second, and third infusions,..Most APRs occurred after the FIRST infusion, and the incidence decreased after the second and third infusions... An analysis by patient background showed that age < 65 years, no previous bisphosphonate use, and no concomitant use of active vitamin D were the risk factors for APR"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9978276/
@windyshores maybe you will find these articles helpful, too.

@bilchar2 the body tends to adjust over time and many of us who persisted out of necessity *severe osteoporosis and/or fractures) found that things improved.

However, some of us who cannot tolerate a full dose, went back to 1/4 dose for a week or two and then movde up slowly. This is the only way I could get on Tymlos and my doctor said he now suggests this in his practice.

The injection pen has "clicks" for dosing. Full dose is 8 clicks and 1/4 dose is two clicks. You can also play around with timing (I switched to morning). I have low blood pressure and Tymlos lowers it further so I drank water and ate salty things and had a blood pressure cuff. After awhile I stopped doing all that.

Main mesage: if you need it, do everything you can to make it work for you in consultation with your doctor. I went from severe to borderline osteoporosis in my spine!

Thanks so much for honest feedback. I have severe Osteoporosis in both hips -3 less severe in back but wrist is -4.8 So I will persevere I believe starting with 1/4 dose is wise I will try that, I work Mon-Thurs so I will start on Friday when I can be home

@bilchar2 they "should" go away in 2 - 3 months (says my doctors/team) at UCSD. They did for me. I had to stop after one month and titrate up (start again at a lower dose and work up). Your body will adapt. You should ask your doctors ahead of time about the side effect possibilities and them for links to reading materials. Things like knowing to take the medicine at night so you sleep the fatigue off, and having anti-nausea meds if you get queasy - I did when I injected in the morning. I had light headaches for a month. Everything went away, like they said! (you can always stay on a lower dose if need be). Drink plenty of fluids.

So appreciate your honest feedback I will definitely take to my team about nausea meds and slowly titrating up with dosage. I am supposed to have a video chat with nurse next week before starting meds. This forum has given me the right questions to ask thanks so much!!

Me too. (help from this group!) There is just so much to be answered. Just give yourself some space (time) to get started. Make sure they provide you with a way to stay in touch about concerns. And remember, you can always stop, try again, change dose, etc. Just don't give up - unless - you've done all your learning and find a legitimate reason this may not work for you. I'm SO glad I hung in there - and I am fine now, and yet, still learning.
P.S. - ask them about all the baseline tests you should have (calcium, D levels, the P1NP, CTX, BMD and DEXA).
Mine weren't ordered automatically. There's a lot to know. I learned from this group! Good luck!

@bilchar2
I know you asked for the more long time Tymlos users to respond, but I will give my two cents worth a little early! It took awhile for me to receive the med and all the supplies (pharmacy error). So, I had a long time to get used to the idea of having to take a med, and also a long time to stew about it. Now, I have only had three doses (full 8 clicks). And some people have reported being fine at first, then developing side effects even months in. But I have to say, so far so good! I inject at night right before bed. Shortly before, I have been drinking about 1/2 cup of zero sugar Gatorade, for the potassium and/or eating something a bit salty, as windyshores says she does (she says she eats something a bit salty)

The first day after, I felt a bit light headed, and a bit nauseous . Nothing debilitating. A bit tired. These symptoms are now greatly reduced. I have to say that I do not have much of an appetite, and feel a little nauseous after eating —but there are some very stressful things happening in my life right now that are probably more to blame than side effects.
Doing the actual shot is really not a big thing once you have done it once.
I pray you have an easy and successful time with Tymlos!

Thanks so much for your input and telling me your experience taking Tymlos. Hopefully we will be ones that have only few side effects. I appreciate all feedback as for me as a hospital nurse I have very little experience or knowledge with this drug.