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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.
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Yes Tymlos and Forteo are both daily injections, but the Tymlos pen has "clicks" so you can control the dose. Full dose is 8 clicks and I started with 2 and worked up to 6 or 7 and still had tremendous gains. These last months I am doing the full 8. The injections are no big deal- like brushing my teeth. Small needle on a pen. You pinch up, stick it in, and push a button to release the med. You have many choices!
Thank you for this information 😮 It is very helpful. Are the side effects the same as the Evenity? Just curious :o)
@sheriv no Tymlos and Evenity are completely different and work by totally different mechanisms.
I found that starting at a low dose with Tymlos allowed my body to adjust to it. Whatever side effects I had eased some and then I would move the dose up.
That said, there may be a certain level of side effects I am willing to accept because I have fractures and know they are worse than the tolerable side effects I have had.
Many have no side effects with Tymlos or Forteo, which work through the parathyroid. Evenity works on sclerostin.
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1 ReactionThank you for the information. I will definitely talk to my doctor about this.
This is all helpful for me to read. I am 68 with severe osteoporosis. Fosamax did not work for me and now after 1 year of Tymlos, my DEXA score has still gone down. Both of my former doctors have retired and I am assigned to see a PA next month, I really am not happy about that as I feel I need someone who researchers osteoporosis carefully. I have scoliosis too and had back surgery when 17 that has led to severe arthritis in the spine (my ribs were fused to certain vertebrate in a procedure no longer done) so my bones are quite something else! I eat what I think is a good diet , do strength training and balance exercises but that only goes so far. Live in Madison, WI and am going to see if my GP can refer me to someone at Mayo as I am (hoping) there could be good help there. IN reading all of the above, I am thinking I could try evenity? thank you and best to all of you great people.
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1 Reaction@pulane Have you been informed of the effects of surgery, scoliosis and arthritis on your DEXA scores?
Good afternoon @pulane. Welcome to Connect. How unfortunate that you are left without your endocrinologists or other specialist. That must be quite concerning. How far are you from Mayo Rochester? Would you be willing to go there? If so, there are several ways to seek assistance.
The best way is probably to use the online address at the top of the Connect home page. Right-hand side..." Request an appointment". The forms are self-explanatory and do not require any medical documents. Within 3 days you will be contacted by an admissions assistant for additional information or clarification. I requested a consultation with an endocrinologist and received an appointment within two weeks.
The appointment went extremely well and I am now on new treatment medication as well as being helped with my stability and strength to avoid falling. The follow-up has been quite supportive. In fact, if you would like to be introduced to my specialist you will find his name here on Connect. He not only shared his experience with all of the mentors but also wrote the heading for the discussion on the possibility of vacation from osteoporosis treatments.
Just click here........
https://connect.mayoclinic.org/discussion/need-an-osteoporosis-drug-vacation/
There is help for you. The other way to gain entry would be by a referral from your current medical professional. Please let me know how it goes. I am here for you.
May you be safe, protected, and free from inner and outer harm.
Chris
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1 ReactionPulane - I have my fourth Evenity injections this week. So far, the only side effects have been that I am very fatigued the next day.
I got Keith McCormick’s book “Great Bones” which tells you everything there is to know about drug treatments.
He has a YouTube video discussing drug treatments. You could watch that and see what you think.
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6 Reactionsno, never. that is a good point, I will ask
I am about 4 hours from Mayo Clinic so not too far. Thank so much Chris. I have sent an enquiry to my GP to see if she could refer me and I will wait to hear from her. I worry about cost as w/out referral I do not think my insurance would pay for anything. I still work, likely will work for many years (have a stimulating job, really like it, research oriented) and use the insurance of the university. Pulane