Connect
My Experience on Evenity for Treating Osteoporosis
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
I have neuropathy in my feet at night, giving me problems sleeping, so have been prescribed Gabapentin; while it does not cure the problem it seems to help in varying degrees. Apparently the neuropathy can be aggravated by some of the pharms for bones. Does anyone have experience with this?
I have my third Evenity injection s this week. I haven’t had any noticeable side effects so far.
I was put off by the staff at the infusion center when they denied side effects. Or, seriously down played them. When I asked, the nurse acted as if she had never heard of such a thing. This causes me to lose faith in them because I know other patients have had side effects.
Makes you wonder what else else you are not being informed of. I have mentioned that I can not give informed consent without being informed. After destroying our trust, they do not understand why we hesitate to just be unquestioning compliant.
I saw where Dr. McCornick who wrote the book "Great Bones" said it is important to go off of Prolia at the right time by taking blood test. PINP & CTX to make sure timing is right. Has anyone else done this?
I see a Bone Health & Nutrition Management nurse who monitors my Prolia shots, Is it better to go to a Endocrinologist? If so, how do you find one who specializes in Prolia?
@salisbury2491 McCormick writes that the standard timing if to do Reclast 6 months after stopping Prolia, but that it really is very individual and the P1NP and CTX can ensure the right timing. Too early and the Reclast won't work and too late, and bone density may have already dropped and fracture risk gone up.
I would definitely go to an endocrinologist but you may have to get these tests ordered via PCP if the endo doesn't do them, and then talk to Dr. McCormick. My doc says half of endos do those tests and half don't and conferences debate the issue all the time. In my experience, one doc did and one didn't- 50/50! So I use Dr. McCormick and get my PCP to order them.
Unfortunately getting good medical care requires us to be proactive and make sure things are done right. It would be so nice to sit back and just follow what docs tell us!
-
Like -
Helpful -
Hug
1 ReactionThank you so much, I appreciate the information
If I were you I would hold off on any new medications if you are traveling. Most likely you will not have any side effects but traveling outside of the country, I’d wait until your home so your doctor can monitor you. Best of luck & safe travels! Hope you have a wonderful time. As far as my t-scores, it’s too early too tell. I just started Evenity 2 weeks ago. When I was on Prolia, my t-scores did improve slightly but I was taken off of it after 1 injection due too severe dental issues. Now it’s been 2 years, & I’m on Evenity.
I wish you the best of luck and hope the Evenity works well for you
Has anyone experienced weight gain and/or indigestion/acid reflux while on Evenity. So many of you have stated certain things going on in your body that supposedly aren't connected to taking Evenity. I'm not so sure these aren't actual side effects - too many similarities among us.
I didn’t have any side affects until the 4th . The 5 th . I had stiff neck and head ache . Felt crappy . The 6 th. . Horrible joint pain , stiff neck and head ache, Nothing would touch it . Had for 4 days . Stiff all over . My neck is still really stiff . Not as bad. Had acupuncture . Helped . I didn’t get side affects right away . A week later for me . Guess they are taking me off of it . Putting me on something else . Sounds like Prolia or a different one. Need a phone consultation. My neck is still quite stiff . Hope you don’t get these adverse reactions
-
Like -
Helpful -
Hug
4 Reactions