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Treating Osteoporosis: What works for you?
Osteoporosis & Bone Health | Last Active: Sep 2 10:11am | Replies (1085)Comment receiving replies
Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!
Replies to "Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012,..."
I recently completed the two year course of Forteo. Had increase in bone density of 12.8% in spine and 5% in hip. I took the shots at night and had no side effects whatsoever. I’m on Reclast now. Did the infusion and all went well with no reaction or side effects.
I am in my 3rd month of Forteo. I did not have bone density issues (DXA Scan was OK) but due to fracture issues (14+) over my life I was diagnosed with osteoporosis. There were some small side effects when I first started Forteo. A bit of bone pain. With the exception of one time, it is always 1 small location and random. The pain was on about a 3 scale and lasts for a couple hours. If I had to make a choice today I would choose Forteo again. I like it in particular because I don't have to worry about how many clicks to use.
Hi, @barbiep Welcome to Connect.
I have been on Tymlos since March. Initially I had some slight light-headedness the following morning (I take it before bed at night) but that has passed. The only other side-effect that I can definitely say is from Tymlos is what people refer to as "puffy belly" which is actually fluid retention. It's a nuisance but I can live with that.
Some people start out with a lower dose but my endocrinologist said to start out with the full dose. Then if you do have a problem you can go to a lower dose and build up.
The only downside I see to Tymlos is the cost. I am on Medicare and so there is no assistance. Many people who are not on Medicare are able to get it at a greatly reduced cost and some even get it free!
This is the first drug I have been on for osteoporosis. I had a minor hip fracture in July 2019 which led to a DEXA. I had not had a DEXA for five years and my previous one showed osteopenia so I believe I should have. If you have a fracture that can make a difference in whether these expensive injectables are approved by your insurance or Medicare, even without having had another drug first.
JK
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I had a difficult reaction to Forteo and my doc didn't want me on Prolia or Reclast (long story) so I didn't meds for quite a few years. All I can tell you is that you never know when you will fracture, and when I did, it was three vertebrae at once. Added to 3 traumatic fractures a long time ago, I now have 6. The pain of this is very motivating, believe me. I am finding Tymlos much easier than Forteo, and started at a low dose then moved up slowly. Evenity is another possibility but newer. Side effects from Tymlos, if they occur, tend to fade. I think a -3.2 could be the start of more fragility, but your MD would know.