Post Evenity DEXA numbers

Hello everyone who suffers from osteoporosis and fractures. I started reading this site in April after I was prescribed Tymlos. It was long time wait for insurance approval. During waiting time I developed horrible back pain and found out that I have a bulging disc which greatly affected my stenosis ( didn’t know I had one). Pain was so unbearable that I decided to have steroid injection. Which didn’t help a bit. Actually, made it worse. After all I found out that insurance delayed because my endocrinologist didn’t submit right paperwork.( My spine T- score -4.9 and I already have 4 fractures). Besides, he never returned my calls. So, I decided to find someone else. I did find NP who specializes in osteoporosis. So far she is great. She prescribed Evenity and insurance approved already. I suppose to have my first injection at the beginning of July. I am scared a bit because I have a lot of pain already. Especially in my back and I know that one of the side effects could be a joint pain. I am still willing to try. I appreciate any thoughts or experiences. @sunny65

The pain from a bulging disc must be awful. I'm so sorry to hear that you are dealing with that, and that the steroid injection didn't help. Given that it didn't work, I can't imagine you'd ever get another. That's for the best because steroids can contribute to bone loss.
With a t-score of -4.9, Evenity is a logical choice, and worth a try. I recently had my 5th set of Evenity injections and haven't had any back pain. Some of us have had pains in other places. I'm curious to know if anyone here has had back pain from Evenity.

Thank you so much for responding to me. The pain from bulging disc is very extreme. It has been almost three months now.No more steroid shots for me. Started new therapy. Only I can hope it will ease the pain a bit. It’s very encouraging to hear that you had 5 injections without back pain. Did you had any other side effects? My first is coming soon. I am anxious but I know that I need it.

I hope the new pain therapy for your back works. Fingers crossed.
I've had back problems for over 25 years, so I'm very happy that Evenity hasn't aggravated that. I had one injection of Prolia 8 months prior to starting Evenity, and that did caused some back pain.
As far as side-effects I've experienced on Evenity--
There's been injection site swelling and sensitivity following each one. After the 4th set, there was some burning too. In each case, it went away withing 24 hours.
Right after the first treatment, I got a cold sore (someone else on here had that too), and I was ravenously hungry. I attribute the hunger to my body needing more material and nutrition to grow bone.
Following the 3rd treatment, I felt extremely tired for several days.
Just after the 5th set (two weeks ago), I got arthralgia in my ankles and in one wrist. It's a tingling feeling--not painful--but it caused one day of sharp pain in one ankle. I couldn't walk on it, but it just suddenly went away the next day. That's the worst thing that's happened.
Over the last couple of days, I've been completely wiped out again. Part of that is down to my smoke detector going off twice in the middle of the night. Haha! Thankfully, it was just a fault in the system, and not an actual fire. I felt like crap the next day, and I've been abnormally tired ever since then. I'm pretty sure Evenity is playing a role in that.
Overall, I'd say that my side effects have been minimal.
I was super anxious about starting the treatment too, but it proved to be no big deal (with the exception of the ankle pain). I'm thrilled with the results so far. My spine went form t-score -3.7 to -3.2 after only 3 sets of injections. I also got my BTMs tested around that time, and they were great. P1NP = 102. CTx = 355.
It's more likely than not that you'll be fine on Evenity. Most people, if they have side-effects at all, have mild ones.
Even if Evenity doesn't work for you, it's easy to stop the treatment and go another route.

I look forward to hearing about how it goes.

windyshores,
Docs who prescribe a year of Evenity followed by three years of Reclast - what do they prescribe after that?

Hi, I had my fifth injection of Evenity 2 weeks ago. I had a few side effects initially... burning in my spine, some tiredness and some joint pain. However those side effects seem to have decreased or gone. I also started taking magnesium which may be helping with the joint pain. I have had a number of fractures in my Thoracic and it seemed to me that the shots affected that area with burning after about 10-14 days of having the shot for about a day or two.
I take the shots in the belly and only have a slight bit of tenderness for a couple of hours. At this stage, I would say the side effects have leveled off.
Also, I will say that I was very hungry the first couple of months on Evenity which is unusual for me but that has also leveled off. I see now that weight gain has been included as one of the side effects (which was not there when I started the medication).
Hopefully this helps.

I am not sure who has to order additional tests. I don’t have endocrinologist. Right now I just working with NP and she specializes in osteoporosis. I had endocrinologist but he was terrible. NP is great communicator. I like her a lot. Should I still find endocrinologist? It’s so nice of you to respond. I really like to be part of this group. I don’t feel so alone. I definitely let you know how my first interaction go. It’s set for July 2. I might have to change that date to sooner. Not sure yet.

I appreciate all information and experience. I wish something makes me hungry. I dropped a lot of weight in one year and I don’t mind to get it back.

@susanfalcon good question and one that needs to be asked of our doctors! I have been told I might need 3 years of Reclast and then a drug holiday. DEXA and maybe bone marker monitoring will determine this.

Others have discussed reusing Forteo or Tymlos, which has also been mentioned by my doctor since Forteo can be taken more than two years. And Evenity has been discussed as potentially being given in short bursts between other drugs, since its anabolic action is a few months.

More research is needed, in a hurry. In the meantime I think the answer is, "it depents." Clealy no drug holidays with Prolia but with bisphosphonates, very possible even probable since they hang around n the body for a longer time. Reclast may even stick around for 10 years!

I just wanted to ask opinion about physical therapy for bulging disc. Since I have a severe osteoporosis and a few fractures already. I been trying to walk and sit as straight as I can. So, my neurologist recommended physical therapist who supposed to be great and knowledgeable. I went to therapy a couple times. Seems like he does a lot and means well. But one exercise is very bothering me- he is telling me to walk leaning forward and only exercise for home is given to me is sitting in the chair and keeping bending forward. I am very confused because I have fractured back and I been told to walk straight and tall. Should I start questioning all his approach ? Or I have just trust him since he is professional.