Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Liked by Mamacita, Alumna Mentor, Chris Trout, Volunteer Mentor, Leonard, parrotqueen
Hi Sue 225, Unfortunately, Prolia is not strong enough for me. It prevents further bone loss, but does not replace bone. My T score, at 4.6, is too severe to take Prolia. I must build bone loss and that only can be done, more quickly, through a risky drug like Forteo or Tymlos. Two doctors have recommended Tymlos and I will begin treatment as soon as the nurse shows us how use the injections. Also, I will continue with my functional medicine doctor and his treatment along with his bone supplements. My goal is to stay on Tymlos a short time, not the full 18 mos. Only time will tell. I hope your choice of Prolia will be successful! Osteoporosis is a misunderstood medical condition by doctors and patients alike!
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Hello Curlylocks, My Endo has also recommended Forteo or Tymlos for me; however, I am very afraid of the side effects and reports of bone cancer in rats. Can you tell me how it's going for you thus far on one of these drugs? What has your doctor told you about reports of bone cancer? My T score is 4.2.
Liked by GailBL, Volunteer Mentor
Hello all, I am new to this group. My Endo has recommended a 2 year course of either Forteo or Tymlos, followed by Reclast infusions. I've been researching Forteo and Tymlos and the warning about bone cancer is frightening! My T score is 4.2. I've previously taken oral bisphosphonates for 7-8 years and also HRT for 5-6 years. I am 62 years old, very petite and small boned, and was an undiagnosed Celiac until age 45. In the past 4 months, I've fractured 2 ribs. I understand Forteo and Tymlos are really the drugs that will build new bone, but the osteosarcoma is especially scaring for me, as I have breast cancer and leukemia in my family. Any feedback or thoughts? Thank you!
@julie2020 I am 65 and also small-boned and slim and 5'2 (I used to be 5'3!). I am also a celiac and was diagnosed in my early 20's. I had osteopenia in my 40's and osteoporosis in my 50's. I have a history of a lot of cancer in my family (sister/breast cancer, mother/breast cancer and non-Hodgkins lymphoma, brother/leukemia). I refused all medication for osteoporosis until the age of 63 when I could no longer ignore the fact that my numbers were continuing to drop although my numbers for hip and spine were in the -3's.
Two years ago my endocrinologist's recommendation was to go on Forteo followed by Prolia. I refused the Forteo because that black box warning about bone cancer frightened me . Also, I have an arrythmia and reading the Forteo info, it mentions palpitations or a racing heart upon injection.
I went with Prolia. I have had three injections. My last bone density showed significant improvement in both the hip and spine. I am due for my fourth injection within the next few weeks. I believe the Prolia has made my irritable bowel worse and has caused worsening constipation issues leading to chronic use of laxatives. Also, after my third injection, I experienced weird chest discomfort and rib cage pressure. I saw my cardiologist and did a stress test (ruled out anything cardiac). I believe it was a reaction to the injection as it started about three to four days after.
I saw my endocrinologist in February/March to discuss stopping Prolia. Now, with Prolia there's no stopping. Once you stop you risk spontaneous vertebral fractures unless you take what is referred to as a relay drug which in my case would be Reclast. I also have upper g.i. issues so oral bisphosphonates like actonel are contraindicated. Because I am small, my doctor said I could probably go for 18 months before having another injection.
I just dont like the fact that Reclast is in your system for 18 months. So, its come down to better to stay with the devil I know? Reclast has a list of unappealing side effects. I fleetingly thought about the doing nothing option but that is too much of a risk.
It would be interesting to hear what your doctor has to say about Prolia.
The problem is that a hip fracture is a scary thought. The other problem is that the drug companies have to come up with better medications.
I will be speaking to my endocrinologist soon to finalize the next step (prolia again or Reclast).
Good luck. You have to be prepared to take a leap of faith.
Liked by GailBL, Volunteer Mentor, JK, Alumna Mentor, Chris Trout, Volunteer Mentor, migizii
@curlylocks, @julie2020, @sue225, and others facing similar issues. Good evening ladies. I see that two of you may be facing a medication decision for osteoporosis. We, (post-menopausal females and males with special needs) in an attempt to have stronger bones for longer and happier lives, have a lot of things to consider. What is our starting point, how old are we, what fractures have we already had, how active are we, do we have access to an endocrinologist or an institutional/research facility with an interest in this phase of all women's lives?
There are lots of questions. I have an opportunity this week to find out some answers to questions that pop up frequently. Tymlos or Forteo is just one of those questions. My repetitive question is, and then what? I am just completing my first year of Tymlos. No side effects, no worries about getting it anymore after it was back-ordered during the early COVID days. When will I see improvement….how much? Since I have severe allergies to bisphosphonates……there aren't many options. Evenity…..is a new medication. How does it work and for whom will it be beneficial?
Do you or anyone else who is sharing these posts have general or even specific questions right now? For those of you who are getting DEXA scans this spring what are you seeing? Improvements? Better than expected? Lacking in something?
For those who have chosen exercise and modified natural diets, how is that working at this point? What kinds of encouragement do you see or want to see?
I just thought that since I was facing these issues this week, I would find out a bit about what other women are thinking, questioning and worrying about. I am not easily convinced, one way or the other. I am looking, like you, for evidence of improvement. Help me out here……let me know what you would ask.
May you all have happiness and the causes of happiness.
Liked by Colleen Young, Connect Director, GailBL, Volunteer Mentor, sue225
Thanks for your feedback, Sue. My mother took Prolia and ended up in the hospital with severe low blood calcium. So, I'm reluctant to start that drug. Also, my Endo did say what you have commented, that with Prolia there is no stopping it. Doctor favored Reclast over Prolia because she indicated Reclast stays in the body longer once you stop infusions, thereby being able to take off a year or two. I am very active, exercise, eat super healthy, take additional vitamins, and am otherwise healthy. It's just my bones that are in such poor shape! I'm very frustrated by the fact that women with osteoporosis just don't have better options!
Liked by GailBL, Volunteer Mentor, sue225
@julie2020 I agree with you it is frustrating there isn't any more options. My Dr and I decided to go the naturel.route so will see at my next Dexa scan .
My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My doctor (GP) wants me to go on Prolia, but I'm just not wanting to do that. I react very strongly to all medications. I don't want to add any new ones, so I've decided to go med-free for my osteoporosis. I'll see what my next scan says.
I just think that my grandmother and mother never took medication for their bone loss, so why would I? My grandmother fell and broke her hip when she was 75. She'd had a "humpback" as long as I can remember. She was also lactose intolerant & hated fish, so probably didn't get much calcium. She was born in 1887 and died at 93 after having her 3rd hip replacement. I assume she had bad osteoporosis. My mother and her sisters never had the broken bone issue. My mother died at 78 from pancreatic cancer. So, I'll wait it out.
Liked by lioness
@gailb, Thank you Gail for telling us about your osteoporosis treatment decision and the background that supports it for you. I cherish my mother's life and her attempts to avoid pain and discomfort. I truly don't think she had a forward-thinking clinician to educate her about osteoporosis. I will always remember the sound of her hip breaking as she turned to give me a hug when I arrived to visit. That is a pretty strong memory. "When we know better, we do better," said Maya Angelou. The goal is to know better and then figure out how to protect our bodies and just do better.
May you be free of suffering and the causes of suffering.
Liked by GailBL, Volunteer Mentor, sparklegram
@gailb HI Gail I also have thinning bones My Dr and I talked about it and decided I should increase my calcium, to 1200 mg a day decided morning and night plus D3 5000 mg I also take Boron, Vit K Dr also told me weight bearing exercises so this is my regimen I have a year before next dexa scan hope this helps
Liked by GailBL, Volunteer Mentor, Chris Trout, Volunteer Mentor
I am presently on Prolia and due for my yearly appointment with my endocrinologist on July 1st. I will have a DEXA test then to see how I’m doing as I was on Tymlos last year (off and on due to side effects). I had broken my foot in 2019. Prolia doesn’t cause me any problems and I had taken it many years ago and had opted for a year off medication. Not a good choice (against doctors advice). I lost all the gains I made plus some….it is a challenging situation. Good luck!
@migizil, Oh no…….so it was in your year off medication that you the injury. Now you are starting over with Prolia. Please don't criticize yourself too much. Each of us has some…..do overs that just serve to remind us to continue to make the very best decisions that we can. Thank you so much for your contribution. Stay in touch here.
@gailb I don't want a hip fracture and I don't want that hump. It's so unattractive and when the spine gets curved like that it pushes up on the lungs and it just sounds like not a good thing. Your grandmother was lucky. Not everyone recovers nicely from a hip fracture. (Wheelchairs maybe forever). And hip replacement surgeries have risks as well. My aunt had a hip replacement. The surgery as they say was a success. The patient, sadly died in recovery from the anesthetic . I have an older husband and no children so no one really to push me around in that wheelchair. I also have a long history of reacting badly to medications. For me taking these potent pharmaceuticals causes lots of anxiety and worry, lots, but that fear of fracturing also terrifies me (maybe more).
These decisions are difficult for so many of us to make. I hope that in the next five years, researchers will come up with better options for this bone disease. Wish you well.
@migizii It is good to hear a positive Prolia story. That is the unfortunate aspect of Prolia that the bone loss is so rapid after discontinuation. What's interesting and great is that you lost bone but didn't get those rebound fractures which apparently can happen quite soon after stopping. Thanks for sharing.
Liked by GailBL, Volunteer Mentor, migizii
Thank you for your kind words! We are all on unique, interesting life journeys. Be well❤️
After months of denials from insurance company, I was finally approved for Evenity and will hopefully start injections next week. Of course, as with all medications, there are side effects however I’ve made the choice to take in hopes that it will help build bone, especially in my spine, where I need it the most.
I will also be taking a diuretic, Hydrochlorothiazide, (since I also was diagnosed with idiopathic hypocalcemia), along with D3 once a day. The diuretic contains sulfa, and since I had an allergic reaction 40 years ago to a sulfa drug I will need to go to visit an allergist to verify if I still have the allergy….ugh!
It saddens me that there are so many struggles in trying to get better, however I will not give up! I want to be strong to be able to play with my grandchildren for years to come without the fear of damaging my spine!
In your email it mentions that you will find out some answers…could you please let me know if there is any information on Evenity? I know it’s a new drug, but hopefully there is some information.
Also, if anyone could share some online videos, or other information regarding exercises…..would like to start this as well.
Thanks so much,
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