Question re: Fosamax & Evenity Injections
My husband has been on high doses of Prednisone for PMR and GCA (giant cell arteritis) for a year. It's taken a toll on his body, including developing osteoporosis. We are very new to this disease and would like some advice.
He's been prescribed Fosamax (Alendronate) and after reading about the possible side-effects, we've chosen not to start having him take it until we can learn more and see what others have experienced as far as side-effects and whether it helped them or not. I've also read when people get off the drug, there is a chance that a person will lose bone mass quickly. Of course, you can't believe everything you read. Which is why I'm here.
I just saw there's another possible medication Evenity which are injections. We would love to know if anyone has tried this with good results.
I'll provide information below about his t-scores and his recent diagnosis of a compression fracture. Hoping someone can help me better understand what it all means. We have a good rheumatologist but when it comes to this, I'm not getting the answers I need.
In February 2024 he was diagnosed with subacute to chronic mild T11 compression fracture which was new compared to 5/2023.
These are his T-Scores:
Lumbar ( -3.30 )
Left hip ( -2.10 )
Right hip ( -2.60 )
Left neck ( -1.50 )
Right neck ( -1.80 )
Thank you to anyone who has the time to provide input.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
I responded to another thread about exercise...
Perhaps you are thinking of Prolia with the bone loss after stopping? It is known to cause a rebound and requires a bisphosphonate afterward.
Two of the five med choices are bisphosphonates (Fosamax/alendronate, Reclast) or Prolia (my docs won't use Prolia). These meds increase density by lowering bone turnover. They are called "anti-resorptives." They may have some impact on the effectiveness of bone builders later on, which is one concer, (see below) but are used after bone builders for many of us.
Meds that build new bone (anabolics) one (are Forteo, and Tymos, which both work through the parathyroid. And Evenity is a bone builder in the first half and anti-resorptive in the second half (it is said to be quite potent).
On this forum we can't say whether starting with Fosamax is a good idea or not with his mostly not bad scores but I hope he can discuss a stronger bone builder with his doctor as a first medication (insurance can be an obstacle).
Many doctors seem to be prescribing Evenity these days. I did Tymlos first because I was sensitive to meds and the dose is adjustable. My gains were excellent in the spine.
If hope he can talk to a good endocrinologist. Another resource is Keith McCormick, who had osteoporosis himself. He wrote the recent book "Great Bones" which is encyclopedic and a good reference.
I like Dr. Ben Leder's video on YouTube "Combinations and Sequencing Approaches to Osteoporosis" and others may chime in with more ideas.
His spine is the one that looks worrisome but with a good doctor he can do well, as many of us do. The meds actually work for most of us!
@windyshores
Thank you so much for taking the time to respond. I’m going to check out everything you’ve recommended.
Thanks again!!
isabelle7,
I had my 12th Evenity injections two days ago. I have been side effect free, for which I am very grateful.
Monday, I have a dexa and will report here what the results are.
Best of success on this complicated journey.
isabelle7,
Regarding cost of Evenity, I am on traditional Medicare and it covers it because I have the injections at an infusion center.
I'm looking for ANY kind of advice(!)....I have had osteoporis for several years now. I'm scared to death of Fosomax....yes, my Dr. prescribed it. It just sits on my dresser....I have been told horrible things about it on this forum, as well as reading extensively about it. I have read that it does not strengthen your bones....it does not increase your bone density. It merely makes them harder, which actually makes you more susceptible to breaks and fractures down the road. But when they re-test you, it 'appears' as if your scores are better. But, they're actually not....from everything that I have read. So....I'm just in limbo here. Had a hip-replacement....it went great. I have never had any breaks or fractures, so that is good. The only thing I am doing is supplementing...and I pray to God it helps, or I just don't get any worse. I am taking Calcium Microcrystalline Hydroxyapatite, Triple Boron, Super Silica (12 drops in a bottle of water, daily), Super K, Magnesium with B6 (phosphate), Multi-Collagen (figure if it helps joints, etc., why not?), Vitamin D3, MSM Organic Sulphur (for joint health, among other things).....think that's about it. I hope I'm doing the right thing, I don't know. The supplements can't HURT....but the Fosamax? I start to take it, then don't. Some tell me to take it.....others call it 'poison'. UGH. I realize that Drs. have to at least talk with a patient about osteoporosis meds., mine didn't....he just prescribed it. If anything happened, after you have been diagnosed with this....and the Dr. doesn't at least suggest it (and make sure that communication is in their records), they know a patient could sue. I wouldn't, but know people who sue at the drop of a hat! Has anyone had any bad side-effects from taking Fosamax? Has anyone refused to use it? We live our entire lives...raising families, working hectic jobs, taking care of umteen bills, you name it.....but I swear, that was easy......compared to the decisions we have to make as we get older. You all take care now.....stay as happy and as healthy as you can. God bless!
I have had my first injection of evenity I have broken my fourth bones .i was on infusions for three year but because of my fourth I am on evenity injections .ON on looking at side effects all I see is death stroke I am frightened to take any more can someone respond their experience many thanks
makeup artist,
I just had my 12th Evenity injections. I have been very lucky with this drug. The first injections, I had some fatigue. Then, smooth sailing. Tomorrow, I have a dexa, so will report results of that.
Everyone is different. Before I started Evenity, my neurologist did an MRI of my brain and an ultrasound of the carotid artery. The cardiologist also cleared me.
Next month I start Reclast.
I am more afraid of fractures than drugs at this point.
@makeupartist most people on this forum do well on Evenity with few to no side effects. The warning about stroke and other cardiovascular issues is scary but is precautionary. One study showed no difference between Evenity and placebo in terms of cardiovascular risk; another study showed a small but significant difference with Fosamax but one article said that might be due to chance. If you tolerated the first set of shots, you are probably going to do well - let's hope!
@monica1234 Fosamax does build bone density. It does this by decreasing bone turnover so the bone density is not from the creation of new bone. It is generally recommended by my docs to do it no more than 3-5 years.
Fosamax may affect effectiveness of bone building drugs like Tymlos, Forteo or Evenity so many of us do those first. This is all quite complex. If your scores are below, say -3.0, you could consider a bone builder first. I believe McCormick, the author of "Great Bones" who is frequently cited here, says below -3.3.
I have several fractures in my spine- painful and disabling. I stay on this forum to give the message that fractures may affect quality of life far more than these meds, though everyone is different. If one med is a problem for you, try another one. Some meds have side effects that get better over time. And one, Tymlos, can be started at a lower dose and ramped up.
@windyshores Thank you for sharing your perspective. I was prescribed Fosamax and took it for 4.5 years. During that period of time I also supplemented with calcium citrate (easier to digest), and Vitamin D. I carefully watched my calcium intake. I was active with walking, hiking, cross-country skiing and weight lifting. By the end of the 4.5 years I had preserved bone density and was in the osteopenia range. Then, I had an endometrial cancer recurrence and had external pelvic radiation therapy and internal (brachytherapy). The radiation oncologist told me that loss of bone density in the pelvic area and lower back often happens with pelvic radiation therapy. And that did happen to me. I had a sacral fracture that was reported when I went back to Mayo Clinic for one of my cancer surveillance appointments.
I saw a endocrinologist at Mayo who told me that I was doing every thing possible to preserve bone density. But then I had the sacral fracture and with that fracture he recommended take Evenity for 12 months (to build bone), and then take another medication such as Reclast to preserve bone density.
My mother had osteoporosis. By my age (72 years old) she had fractured her shoulder and her hip (both repaired). She was very frail and those fractures very definitely affected her quality of life. While my mother wasn't as active as I've been throughout my life with physical activity she was very social and her frail status resulted in being homebound and depressed.
I'm half way through the 12 months of Evenity injections with no side effects other than some soreness at the site of the injections that lasts for about 24 hours. Quite frankly not many people come here to let us know that they are doing just fine on their osteoporosis medications. I'm here to share that my sacral fracture is healing, I've had no other fractures and I'm living an active life.
Thank you so much for letting me know your experience