Anyone taken Evenity (romosozumab) for Osteoporosis?

Prolia was the only med my endocrinologist would NOT suggest. I believe because of the sharp drop in bone density when stopping but perhaps also because I have lupus. I will ask him next time. Interesting that your spine is not osteoporotic yet. Look up each of the drugs: Forteo, Tymlos, Evenity, Reclast....I needed a bone growing anabolic first as you would too and the first three are in that category. I am doing Tymlos so I can adjust the dose and am saving Evenity for later. I am sensitive to meds and my treatment was delayed for years because docs didn't want me to have side effects (like afib), and the net result was fractures. I will take side effects over fractures for a year or two anyway. Tymlos has been tolerable with the ramping up of dose.

Dear windyshores, Thank you for your information. I really appreciate your response. I too am very sensitive to medications and I have refused to take any of the osteoporosis drugs even though my endocrinologist has told me he felt it was necessary five years ago. I am also, now very concerned because my allergist just told me to not take any COVID booster while I am on Prolia. This is so frustrating since I clearly asked all of my doctors to address the warning to get permission from your doctor before getting vaccinated while on Prolia. Each of them said don't worry about that ! You will be fine. Unfortunately my allergist said I would be fine as long as I waited 6 weeks after Prolia to get the booster. Now, he is saying it is not Ok to get the booster. I did get the booster in November because that was six weeks after the last Prolia injection. If we need another booster, I don't know what I will be able to do. I ask all of my doctors "What is the Risk vs the Benefit ?" of any medication and "Would they tell their Mother to take this drug?" I figure that should protect me. Obviously, I was wrong. Please continue to connect with me and pass on any more wisdom you have. I really like the "ramping up of doses" that you are experiencing. No one suggested this approach to me. I will continue to update you on my journey to figure this out.

I would consider Tymlos, start at 2 clicks not 8, and move up only when no or few side effects. Takes a week or two between doses. Move up to 3, then 4, and it is okay to stop at 4 or 6 or 7 or wherever you land without major side effects. My doc is thrilled with 6 clicks and would have been okay with 4. Sometimes I do 7, absolutely cannot do 8! Also fool around with timing, eat something and drink a full glass before you take it, and maybe a tylenol. You have to be patient at first. Most of the side effects fade as your body adjust- it is a hormonal shift. Promise.

It is kind of a mystery that your spine is in such good shape, relatively speaking so maybe the Prolia did help!

Dear windyshores, It is wonderful to have the information that you provided. thank you. I can present this information to my doctors ! Lets continue to communicate. I really appreciate it. I take at least 3,000 mg of tylenol every 24 hours just to be able to function since my second injection of Prolia. I really worry about my liver, but I do want to stay as active as I can. I don't expect to be pain free, but in order to do normal daily tasks my muscles and joints are so painful that I need the tylenol. I think I probably need all new doctors also. Not one of them even suggested Tymlos.

Maybe blame insurance, not doctors. The protocol required by insurance is to try biphosphanates or Prolia first, which is crazy but.....If you have tried Prolia, have fractures, are at high risk for fractures, you should probably be able to get coverage now. If your income is lowish, there is an assistance program for Tymlos at Radius. You call Tymlos Together to coordinate.

Dear windyshores, Thank you for your reply. I have been researching the osteoporosis drugs and Tymlos has the same side effects listed as Prolia. Also I saw my doctor who manages my breasts, since I have LCIS, yesterday and she said the best drug to take is raloxifene, to replace Prolia. This is so very confusing. raloxifene also lists almost all of the same side effects as Prolia. I am so sorry that I ever got involved in taking any of these drugs. Do you give yourself an injection of Tymlos every day? How did you start out at a low dosage and then increase it? I do have an endocrinologist because I had a parathyroid adenoma removed. I think you said your endocrinologist was managing your tymlos. I don't know who I can trust to give me the best replacement for Prolia. I would like to find other women who have replaced Prolia and see what they did. Thank you

You cannot base decisions on a list of side effects, in my opinion, because you don't know how your own particular body will react. Your decision will depend on your DEXA scores and whether you have any fractures, and also on the status of your LCIS. I had invasive mixed ductal and lobular cancer and did Femara, which worsened bones. Raloxifene may be helpful for preventing invasive cancer, and will help suppress bone loss, but will not be as effective as Tymlos for bone growth. So if your LCIS is recent but pathology shows raloxifene to be a good choice, and your DEXA score is not severe, raloxifene may be a good way to go. You can google side effects and the main concern is deep vein thrombosis/pulmonary embolism/stroke which is rare but listed.

Tymlos comes in a pen with 8 clicks. To adjust dose, you just do fewer clicks. I started with two clicks. There are side effects, yes. If you have spinal fractures like me , side effects are more tolerable than the pain and disability of more fractures. But it sounds like your osteoporosis is better than mine and raloxifene will serve two purposes for you!

ps Reclast is also used for cancer patients (not that you have cancer).

Hi. This is my first time using this forum. I was recently recommended by my Dr to take either Tymlos or Evenity.
I had taken Prolia for almost 5 years and had seen improvement but March 2021 I fell and had femur fracture. Dr can’t say for sure if it happened because of the way I fell or if it was a side effect of Prolia. It does state right femur fracture as a side effect.
So he started me on Forteo (Terepartide). Unfortunately, I started feeling very fatigued and getting breathless and my calfs hurt. Plus the calcium in my blood went up drastically. So stopped now for a month and feel so much better.
Now he is telling me to start Tymlos or Evenity. I am scared to start either one because of the side effects. I have until May to decide.

Evenity can be continued for two years and will continue to benefit bone density according to this report.
https://pubmed.ncbi.nlm.nih.gov/29694685/
The report is based on a study of patients who received Evenity for two years, followed by Prolia after completion of 2 years of Evenity. The report says that bone density continued to increase throughout the the 2 years of Evenity and continued to increase during the following year of treatment with Prolia.
I would be interested in thoughts of others in regard to this possible treatment
I have been taking Evenity for 7 months with no side effects.

Unlike Forteo, the Tymlos pen has "clicks" so you can control the dose. Start with two and move gradually up to minimize side effects. Tymlos and Forteo both stimulate parathyroid hormone. In my experience and others', the body adjusts to treatments related to hormones over time, so start low and move up to 7-8 clicks over a couple of months.

I would also comment that the same company that makes Evenity, makes Prolia, so of course they recommend that sequence. My doc will not prescribe Prolia, but low dose Reclast, after I do Tymlos. If my bones aren't good enough after Tymlos I am going to request Evenity then.