Struggling with making an osteoporosis treatment decision

Are you still having the fatigue? Any pain? Once a month I get 2 shots of Evenity for osteoporosis. I don't know what I will take when my 12 months of Evenity is finished. I may have to take oral bisphosphonates but I would prefer, if advisable, to take something like Prolia with injections every 6 months. I have a few months before I finish the Evenity.

I’m joining this forum because I have similar questions. My last bone density test has indicated moderate osteoporosis in my lumbar spine. My doctor wants me to start on a medication immediately but has agreed to refer me to an osteoporosis clinic.

My concern is whether one can start a medication and then stop/change after consulting with experts. It doesn’t seem like a smart way to proceed. I was on fosomax for 5 years in my 50’s. My doctor is really pushing for me to start Prolia.

Can anyone share their experience with Prolia or other drugs and/or risks of starting and stopping these drugs?

Hi there heyhey. I am 76 and found out that I have severe osteoporosis about this time last year. I was referred to a good endocrinologist and he advised me to take Evenity - monthly injections. I didn't ask many questions and didn't know much about it. After about 4 months I was fatigued all the time and felt weak so I decided to stop the Evenity. I was told I had to get on another medicine right away because I would start losing bone density as soon as the treatment stopped. The doctor prescribed a once a day self injection Tymlos. After a couple of weeks I stopped it because of side effects - mostly severe fatigue and feeling "bad". The doctor then prescribed oral Fosamax which I tolerated well but I was concerned that I might be sacrificing a good treatment for a mediocre one. I asked him if I could go back to Evenity because I knew what it was like and it was much easier than the Tymlos. He wouldn't restart it. I decided I wanted a second opinion and I chose a Rheumatologist who had a reputation for treating osteoporosis. She consulted with the Evenity sales rep and he said there was no reason not to restart the Evenity. At the same time I got a new DEXA scan and I was very encouraged by the results. The scan showed a significant improvement in my spinal bone density. There was a small degree of bone loss in the hips. My big concern is the spine because I have other health issues. The gist of this story is that I am very sensitive to medications of all sorts. I have side effects that are the rarest. With Evenity the side effects are really very minimal. I gained some weight and I think the initial side effects I had might have been due to the fact that I was 20 lbs underweight when I started it the first time. I have gained the weight that I lost back plus a little more. I am only 5 feet tall and now 116. My average weight for many years was 109 lbs. I think that my diet had not been as good as I thought but when I started Evenity I was trying to get the calcium I needed every day from food instead of calcium supplements. It worked but I put on weight. I need to exercise more too but I have a painful nerve condition, neuropathy that makes that hard. My message to you is try the Evenity. It was very effective for me and I am not having any side effects now. I understand your fears and concerns as I had them too but you need to move forward on this. I think it is better to try the Evenity and see for yourself if you have a problem with it. I know it is a new drug but that does not mean that it is necessarily going to cause you problems. You will definitely have problems if you don't take something to stop the osteoporosis. There are alternatives that are "natural" and you can manage your diet and exercise to try to rebuild bones that way but it will be a much slower process. Remember that everyone is different and that more people will complain than will praise anything. Good luck to you.

Your sharing is very helpful for me since my doctor suggested me to be on Evenity too. Evenity can only be administered for one year. Are you near completion? Does your doctor suggest what treatment to follow after 12 months?

I had my last (the 12th) Evenity injection today. I will start on Prolia next month. Prolia is administered by injection once every six months. It is supposed to be the best thing to follow Evenity. I gather from reading on this blog that patients remain on Prolia for the rest of their lives. My doctor said that there are minimal side effects. Supposedly there may be some bone pain which I believe I experienced once years ago when I was on oral alendronate. The doctor said that if you have any bone pain it resolves or goes away after a week or so. The Evenity injections are momentarily a little painful while the medicine, which is apparently thick, is being injected. The site of the injection remains tender to the touch for a few hours but all things considered I have not felt it to be a problem and I am not a stoic person. I have had a very positive experience with Evenity. I hope it works out for you too.

@catharbert This is a welcome and wonderful post. It is important to get your feedback and to know you had a positive experience with the newest bone builder, Evenity. My understanding was that Evenity did both......build bone and maintained bone. However, now I see you that is only while you are taking the injections. Now that is over and you will be starting Prolia to maintain what Evenity has done for you. Am I right?

I just started Prolia after two years of Tymlos. So far so good. It is only a few weeks. It sounds like your doctor feels any bone pain will be resolved. Good luck and please check in with us so we can follow your journey. It is very helpful.

May you be healthy and whole.
Chris

Chris you are correct on all points. Evenity helps build new bone as long as you are taking at least 1200 mg of calcium and 4000 units of Vitamin D3 a day. Weight bearing exercise will also help. I have not been able to exercise much due to my neuropathy yet my first Dexa scan after only about 4 months showed significant improvement in my spine, but some loss in my hips which I think is because of the lack of exercise. Yes, I expect to be on Prolia forever just to maintain the gains I have made with Evenity. I hope I can tolerate Prolia as I am prone to side effect from most medicines. I did not have any significant side effects with Evenity. No bone pain. Almost everything I take causes me to be tired.

I gather that you are not having any side effects with Prolia.

I will have a Dexa scan in June to see where I stand at the end of Evenity treatment and I'll share that here.

Cathy

I had my last (the 12th) Evenity injection today. I will start on Prolia next month. Prolia is administered by injection once every six months. It is supposed to be the best thing to follow Evenity. I gather from reading on this blog that patients remain on Prolia for the rest of their lives. My doctor said that there are minimal side effects. Supposedly there may be some bone pain which I believe I experienced once years ago when I was on oral alendronate. The doctor said that if you have any bone pain it resolves or goes away after a week or so. The Evenity injections are momentarily a little painful while the medicine, which is apparently thick, is being injected. The site of the injection remains tender to the touch for a few hours but all things considered I have not felt it to be a problem and I am not a stoic person. I have had a very positive experience with Evenity. I hope it works out for you too.