High anxiety regarding Reclast or Prolia decison for OP meds

@gently
I actually did start to use the pen at .60 (six clicks) and I have no side effects. I will use it to the end. Thank you for validating my choice. I just couldn’t let it go to waste! I know it’s one of the best drugs.

I am sorry I just saw this because I would tell you to use your Forteo pen! It would give you a great boost in your spine prior to ever going on Evenity, Prolia or Reclast. I have had 5 years of Reclast and it is not much of a bone builder. I just finished Evenity to build bone. I got 8% on Evenity. Not as good as others probably because I had Reclast first.

from the archives of windyshores | @windyshores | Oct 3, 2022
I started Tymlos at half and then full dose and ended up in the ER. Had afib, but also was dizzy, headachy, pain all over, nausea- lots of side effects.
I stopped, then met with docs, then restarted at two clicks out of 8 (my idea). I slowly went up over two months, to 7 clicks, where I have stayed for a year. This really minimized side effects. Many days I have none at all.
I have found that hormonal drugs like this (and my cancer med too) have more side effects at first and they change and even lessen. But my full dose attempt created a cardiac side effect that was serious.
With fractures and a committed desire to avoid further pain and disability, I was determined to get back on and have not suffered any significant side effects with this ramp up plan.
That said, Forteo was intolerable for me and does not have an adjustable dose. I have not tried Evenity but that might be an option for you.
Or....you could try two clicks of Tymlos and see what happens, then go to 3, then 4.....and so on!

@gently
Unfortunately, my rheumatologist will not authorize the tymlos prescription any longer due to the hypercalcemia. He stated the same for Evenity since it can have the same effect on someone like me, so he is really only offering Prolia. I need another medical team but must wait. The endocrinologist appointment I have is in January 2026. I will be on my own once this tymlos pen runs out until then, unless some miracle comes my way. Doing everything I can in the meantime, like eating very clean, weight bearing exercises and supplements. I wish I had not pushed the tymlos to the 0.8 for the last three months, because that is what pushed me over the line. At my last appt with my rheumatologist he made it clear, he did not agree with a titrated dose. I should have kept my mouth shut. I thought he would be more flexible. I have a feeling that there are many people who are successful (like windyshores) with the lower dose. Many in the medical community are not in agreement of this and it is very disappointing.

lhankins,
what were your serum calcium levels before Tymlos and after?
How much parathyroid testing have you had. Hyperparathyroidism is often
undetected as it is difficult to test for and many practitioners don't know
how to test for it. Parathyroid dysfunction causes osteoporosis.
I'm disappointed, but have confidence in a workaround.
I suspect that the 80mcg dose is too high for many of us. But if you do
have a parathyroid issue, it needs to be resolved first anyway.
Waiting till January doesn't seem workable. If you can, get on a waiting
list and call every possible day.
Meanwhile the Tymlos that you have taken is giving you some protection.

@gently
Yes, I have had my parathyroid gland monitored for years since I had thyroid issues when I was in my twenties. So my calcium and parathyroid levels were in normal range the month before I started Tymlos. I am currently on a waiting list for the endocrinologist appt in January. I am hopeful something will come up sooner rather than later. That appointment is over 200 miles from my home because no one is taking new patients in the two surrounding counties for me. COVID drove many of the specialists in this area into retirement or they relocated; so it is a serious dead zone for good healthcare.

I believe the main reasons I have osteoporosis have to do with being low weight; over trained over the years in cardiovascular rather than weight bearing exercises; and use of SSRI’s for a period of time.

Praying I can hold steady until I get in to see the new doctor!

@255anny, I am as paralyzed and confused as you are... and scared, to boot. I have read so much research at this point that it is a muddle in my head. I'm coming to this discussion late. Have you reached any conclusions?

I ended up doing the Reclast infusion in early December. It was a hard decision, I didn't want to do either! I have researched and scrambled down every rabbit hole in hopes of finding the right answer. I didn't feel comfortable following the Prolia with the Evenity, which was the sequence my Dr wanted to follow. There was/is not much research to back that up even though I see Amgen promoting that. Just for my own knowledge, I want to know more about that. The Reclast infusion was rough, not gonna lie, haha. Basically 3 days of achy joints and hurting all over. I did hydrate very well for days before and after. I also followed a schedule of Tylenol before the infusion and for 3 days after. Maybe 4. I did take one Claritin before the infusion. I don't see my Dr til August, so I'm not sure what she will want me to do regarding medication. But her last thoughts were to follow up with Evenity. I'm fine with that!!

@255anny, thanks for getting back to me so quickly. I'm still going down rabbit holes and applaud you for having made a decision! 🙂 The sequencing situation is very confusing. I'm seeing more references to Prolia followed by Evenity, but that does seem new. Can you remind me if you had had any Prolia injections before you opted for the Reclast?

Am sorry you had such a tough response to the Reclast infusion, but I'm grateful you let me know that's a possibility, even in spite of really good prep -- which you obviously did. But I'm glad to hear the aches and pain passed in a few days. Wishing you all the best going forward!

I'm not comfortable with the Prolia -> Evenity sequence. But there might be concrete medical studies that support it, I just haven't read them. I have not had Prolia at all. I'm hoping to avoid that at all costs. The reaction to the Reclast is price I paid to avoid it, haha. My Osteo drugs have been Forteo 2 yrs, Evenity 1 yr and now the 1 Reclast infusion. I will be on Osteo medication for life no doubt.