My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

homesfs | @homesfs | Jun 24 8:02am

I am supposed to start Evenity tomorrow and I’m hesitant. Thank you for posting this.

gravity3 | @gravity3 | Jun 24 8:13am

In reply to @homesfs "I am supposed to start Evenity tomorrow and I’m hesitant. Thank you for posting this." + (show)

Go into have my 11th set of injections tomorrow. Never had any noticeable side effects

homesfs | @homesfs | Jun 24 9:15am

In reply to @lidiad "I have had 7 injections so far and my hair starting falling out a few months..." + (show)

I am so sorry I am suppose to start tomorrow and I am very recultant

hopefullibrarian | @hopefullibrarian | Jun 24 11:32am

In reply to @pami "I had my fourth injection of Evenity and my hair is falling out. I don't want..." + (show)

I had the opposite problem. After one Prolia injection, my hair was coming out in clumps. It was freaking me out. With Evenity, thankfully, I haven't noticed any hair loss.
Are you having bone turnover marker tests to be sure Evenity's working for you? Most people have great results, though I've read a few stories on here ehere that wasn't the case. I can't imagine you'd want to lose your hair to then find out it didn't work. If it IS being effective, you may decide it's worth investing in that wig.

lidiad | @lidiad | Jun 24 11:46am

In reply to @pami "I had my fourth injection of Evenity and my hair is falling out. I don't want..." + (show)

I just hope it grows back after treatments

pami | @pami | Jun 24 11:57am

In reply to @hopefullibrarian "I had the opposite problem. After one Prolia injection, my hair was coming out in clumps...." + (show)

Thank you for your response. I will check with my doctor to see if Evenity is working. I am hopeful it has done some good because my bones feel better in my back.

laurensb | @laurensb | Jun 25 11:53am

Just finished my year on Evenity and had these T-score results compared to 18 months ago:
AP Spine was -1.2; now -0.2
Femoral Neck was -3.0; now -2.8
Total Hip was -2.1; now -1.7
Total Forearm was -2.2; now -2.4
1/3 Forearm was -2.2; now -2.3
UD Forearm was -1.5; now -2.1

Feeling a bit disappointed. Thoughts?

missy61 | @missy61 | Jun 26 2:09pm

In reply to @laurensb "Just finished my year on Evenity and had these T-score results compared to 18 months ago:..." + (show)

Hi! I'm recovering from a back compression fracture from coughing. So, I can tell you from experience that life is really difficult with fractures. So, I am so happy that your hip & spine numbers are so good! You only have the one number worse than -2.5. I would recommend asking your doc about that & the forearm numbers. I would ask about physical therapy, so you have a personalized safe plan. Weight bearing exercises are great for building bone. Also, I recommend asking if you need a treatment to keep bone loss at bay.

missy61 | @missy61 | Jun 26 2:22pm

In reply to @homesfs "I am so sorry I am suppose to start tomorrow and I am very recultant" + (show)

Hi, I can see that there are people that are having unwanted side effects. It has to be very scary seeing that right before you are scheduled to start. So, I thought that I would let you know that I just had my 4th dose. I am one of those people that has a *horribly* sore arm for a couple days from a simple flu shot. I felt like I had the flu after the shingles vaccine. I even have a noticable scar from a childhood vaccine. I haven't had any adverse reaction to this at all. Nothing! So, try not to pre-worry. I really hope this helps. For reference, mine have been in upper arms.

19debbie53 | @19debbie53 | Aug 3 5:00pm

The day after my second injection, I had a very painful 'attack' and had pain around my stomach and back for about 30 minutes. I have had 5 injections so far and I am due in one week for my 6th. I feel very tired, just not feeling well EVER, and I am very achy in almost all of my joints. I do have headaches every day, my neck is stiff and I am having a hard time with acid reflux that isn't controlled by omeprazole, pepcid ac, or famotidine. I'm eating a lot of Rolaids. Before the Evenity, I tried Prolia injections for a few years and my bone density increased, however, I started going deaf. I now wear hearing aids. The weekly pills for osteoporosis gave me severe, painful esophageal spasms. I am having a hard time with this drug, as with the others, and I'm very concerned as to what I will take after or if I am able to complete the 12 months of Evenity. I hope the rest of you have better luck!