Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14, 2024

Hello! My first post here as a new member. I am an active 69 year old female who was diagnosed many years ago with osteopenia but now have osteoporosis. When diagnosed with osteopenia I gave several drugs a try. I had side effects from all the oral choices I took, and when giving myself Forteo shots, broke out in hives all over my body. After that, I decided I would take my chances and go the natural route to keep my bones healthy with diet, consistent exercise and Calcium/Vitamin supplements. Fast forward to present time my last bone density scan was worrisome, (a -4,4 T score in my spine). An endocrinologist strongly suggested treatment, (shots or infusions), but I still fear side effects. I am currently trying to educate and empower myself by researching all options. I am already a bit overwhelmed with so many differing opinions. Drugs or no drugs?! The possible serious side effects of drug treatment still frighten me. Has anyone here diagnosed with more advanced osteoporosis, remained fracture free? Am I at such a high risk that I’m doomed without drug treatment? Thank you in advance for any advice, experiences, etc.

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Profile picture for mic1953 @mic1953

I am not sure what you mean by saying I have crossed the line where I can use the “excuse” that I didn’t know. I only saw my T Score and nothing else.

As far as pros and cons go, I have looked into both and it seems there are many serious cons and not that many pros.

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I apologize if I misjudged your efforts. It sounded to me like you had heard only bad things about all the osteo meds and were avoiding them without looking into it further, and I was just wanting to encourage you to do so before giving up on them.

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Profile picture for windyshores @windyshores

I wrote a really long response and lost my internet connection and it disappeared. I will try again.

A DEXA of -4.4 is serious. I had three lumbar spine fractures at -3.7. The pain is horrific for weeks or months, and there is residual disability, pain and even some loss of independence. This is the reason I have been on this forum for awhile. To be honest about fractures. I have endured side effects because quality of life is worse with fractures than with side effects.

One problem is that osteoporosis has no symptoms and you can feel strong. At -4.4 you are not strong and are at risk.

Like you, I tried oral bisphosphonates and Forteo over the years and could not tolerate them. I am willing to endure side effects, as I said, but I mean I could not tolerate them at all. I did cancer meds that affect bones but my doc did not prescribe Reclast as is usually done with this treatment, due to my afib.

COVID interfered with me going on Tymlos. After the fractures, I had to decide between Tymlos and Evenity, the only choices left to build bone. I had assumed Tymlos might cause the same issues as Forteo but it didn't. Evenity was new at that time, and I had seen a masterclass in which someone did Tymlos and then Evenity, in sequence. So I have done that. Two years Tymlos, 4 months Evenity. I will finish by "locking in" with Reclast.

You will probably be offered Tymlos or Evenity. Tymlos is an anabolic that works through the parathyroid. I went from -3.7 to -2.5 on it, severe to borderline. It is good for spine. The injections are daily, done at home, and the medicine leaves your body in a few hours, half life 1 hour. Evenity is anabolic the first half and anti-resorptive for the second half, and is quite potent. It is a monthly injection done at the doctor's office and stays in the body about two months, half life 12.8 days. Many docs are prescribing that these days. Even if a doctor suggests something, you can choose.

I liked Tymlos because I am sensitive and have health issues, and the dose on the pen is adjustable. I could not tolerate a full or even half dose and restarted with 1/4 dose and moved up. Many of us are doing that. It lets the body adjust. There may still be side effects but very tolerable and better than fractures.

I fractured those 3 vertebrae with one unwise movement. Again, my DEXA was -3.7 in spine. I really hope you consider meds, and quickly. Don't lean over to pick things up or twist. A PT can help us move wisely. But I still make mistakes. Hope you appreciate that I am trying to be honest. I don't like scaring people!

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I am a -4.0 on spine. I have started researching the drugs and it is scary to hear about the side effects. Why are you only 4 months on Evenity?
Why do you need Reclast after being on Tymlos and Evenity?

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I feel the same as you. I have used bone supplements for years to no avail. I am 71 with a -4.0 spine. I have not had any fractures yet. My new endocrinologist wants me to go on drugs. Part of me wants to just take my chances without going on the drugs, but when I read about how painful a fracture is I realize that is not the best option. Wish you all the best on your bone journey!

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Profile picture for karensm @karensm

I was wondering, did your score get better? Or stay the same. I am 80 yrs female and my Dr has suggested prolia but because of my back pain decided I did not want more pain. She asked Foxmax daily pill for a year but you cannot move for 30 min and stay in sit up position. It can get heartburn. Have you tried that?

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A pharmacist friend of mine told me that Fosamax really messes with your gut.

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Profile picture for mcallister1002 @mcallister1002

I am a -4.0 on spine. I have started researching the drugs and it is scary to hear about the side effects. Why are you only 4 months on Evenity?
Why do you need Reclast after being on Tymlos and Evenity?

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Windyshores left this group months ago. She is no longer active on the forum.

After a bone builder, you need a biphosphonate to preserve gains. I am into my second year on Tymlos. My T-score of -3.0 is now -2.0; probably better since my DEXA was six months ago. My plan for afterwards is to take Fosamax for a couple of years, then go on a drug holiday during which I'll have DEXA scans to monitor.

Or, who knows? I learned that Keith McCormick, the author of "Great Bones", took Fosamax years ago and then stopped using meds. He relies on nutrition and exercise, and a DEXA every two years. He is 71 years old and is still athletic. I'll probably consult with him later this year to get his thoughts on what to do.

My side effects on Tymlos have been extremely mild and short-lived. Nothing that would even keep me from leaving the house. It's been well worth taking, a hundred percent.

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Profile picture for petitefitsmartfemale @petitefitsmartfemale

@debbie1956 and @lilyrock8, how much K-2 are you taking? I just joined and since December 2024 I have been doing Orange Theory Fitness Classes about 6 days a week and taking supplements, eating more protein and fat and hoping my next bone scan is not severe osteoporosis still. I went from 4'10.5" to 4'10" to now 4'9" tall and about 100 lbs. I wore a back brace for Scoliosis when I was a child. My Scoliosis is starting to get worse again. I am doing well with the strength classes and building my strength back before I stopped working out after the terrible car accident in 2008. I am age 63. I wish I chose a different name but usually it takes so long to find a name no one has so I thought this name would immediately be accepted. I need to get ready for bed, but I found this site looking up how much K-2 should I be taking for Osteoporosis. I am sensitive to medications also. Thank you everyone for participating, sharing and caring. Thank you for letting me be part of your group.

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Hi, Well first, I like your screen name! I'm 5'0 and weight 105. I exercise about 40 minutes a day with weights and Loren Fishman's yoga for osteoporosis. My weights-work comes from Margaret Martin's melioguide.com. Check out her site. I walk about 2-3 miles a day and take 2 or 3 cardio dance classes a week. I see a nutritionist who recommended 1 capsule a day of K2. It's from Maxx Labs. I get it from Amazon. Each capsule has 500 mcg of Vitamin K2 (MK-4) and 100 mcg of K2 (MK-7). I don't understand any of it but that's what I take! Along with calcium (1200 a day) and D3 (2,000). My level of both calcium and D3 is good on blood tests so I think these are just maintenance doses. I hope this helps. Good luck! About me: I'm 73. I was on Fosamax for 2 years and my scores improved. I went off it about a year ago and went from a -2.5 Dexa (on my lower back) to a -2.6. The doc is bugging me to go back on Fosamax but I'm giving it another year of intensive exercise and diet. This is so hard! Also, did you get a trabecular bone score? Not all labs do it, but it measures the QUALITY (not just density) of bone. And mine is really good. But doctors seem to all say that if the density number goes below a certain point you need to go on drugs --without seeming to look at the whole person. Best of luck!

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I became a Gerontologist in 1990. I was 35, I think. I had never heard of osteoporosis but did research and wrote presentations on the subject.

Have read a lot of studies on osteoporosis as well as osteopenia.
Have dealt with and counseled many females and some males who had both disease states and those who have broken hips, have been to the funerals of far too many women who died from a broke hip. Broken hip and spine issues, the complications related to both used to be the leading cause of death in women, and still is in some countries.

Your skeletal mass and strength is what holds everything together and without it life becomes extremely fragile with each month that passes in life.

The consequences of having osteoporosis is far worse than drug side effects to keep you from getting osteoporosis. It isn't so much the osteoporosis a it is the complications it causes.

Having osteoporosis can easily kill you, taking the drugs usually does not.

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Profile picture for steinbeck @steinbeck

Thanks for your reply mayblin.
Here are my T-scores: -2.7 spine, -2.2 hip, -2.6 femoral neck. FRAX was not calculated due to a T- score below -2.5 for the spine or femoral neck.
I had an N-Telopeptide urine test which showed 33 nM BCE/mM Cr.
I am taking Jinteli 1 mg/5mcg.
My endocrinologist wants me to take Fosamax and stay on the Jinteli. My GP, who ordered the urine test, recommended taking only Jinteli.

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Thanks for sharing!

If you are interested in calculating your FRAX score, you can use the following link:
https://frax.shef.ac.uk/FRAX/tool.aspx?country=9
In case your DXA includes TBS score, then FRAXPlus gives a more accurate FRAX score.

I think it's worth asking your endocrinologist whether adding Fosamax to your current HRT is necessary or offer additional benefits - especially if your uNTX shows adequate suppression (what's your lab reference range and/or your baseline?), your FRAX score low, and that your DXA results are improving.

The estrogen dose in Jinteli 1mg/5mcg is a standard one used in osteoporosis prevention. Are you considering exploring bioidentical form of HRT if you plan to use for a few years in the future?

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Profile picture for njx58 @njx58

Windyshores left this group months ago. She is no longer active on the forum.

After a bone builder, you need a biphosphonate to preserve gains. I am into my second year on Tymlos. My T-score of -3.0 is now -2.0; probably better since my DEXA was six months ago. My plan for afterwards is to take Fosamax for a couple of years, then go on a drug holiday during which I'll have DEXA scans to monitor.

Or, who knows? I learned that Keith McCormick, the author of "Great Bones", took Fosamax years ago and then stopped using meds. He relies on nutrition and exercise, and a DEXA every two years. He is 71 years old and is still athletic. I'll probably consult with him later this year to get his thoughts on what to do.

My side effects on Tymlos have been extremely mild and short-lived. Nothing that would even keep me from leaving the house. It's been well worth taking, a hundred percent.

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Thank you for your reply. Thank you for letting me know Windyshores left the group. I'm glad you told me what drug you are using and that you haven't had any side effects. I am so afraid of side effects and mistakes that doctors can make. I am familiar with Dr. Kieth McCormack, I have been following him for awhile now. I have the "Great Bones book as well, on page 563, he talks about Forteo and Tymlos and states that his major caution with both drugs is that their effects on hip and forearm BMD must be monitored. Both drugs improve spine BMD but spine has higher trabecular bone than cortical bone, whereas hips and forearms have more cortical bone. He says that he has seen several patients with forearm densities plummert after two years on PTH analogs. My forearms are very skinny so that scares me! And my hip is also losing bone.
Has your hip BMD improved in the year you have been using it? Has you doctor been monitoring you?

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Profile picture for petitefitsmartfemale @petitefitsmartfemale

@debbie1956 and @lilyrock8, how much K-2 are you taking? I just joined and since December 2024 I have been doing Orange Theory Fitness Classes about 6 days a week and taking supplements, eating more protein and fat and hoping my next bone scan is not severe osteoporosis still. I went from 4'10.5" to 4'10" to now 4'9" tall and about 100 lbs. I wore a back brace for Scoliosis when I was a child. My Scoliosis is starting to get worse again. I am doing well with the strength classes and building my strength back before I stopped working out after the terrible car accident in 2008. I am age 63. I wish I chose a different name but usually it takes so long to find a name no one has so I thought this name would immediately be accepted. I need to get ready for bed, but I found this site looking up how much K-2 should I be taking for Osteoporosis. I am sensitive to medications also. Thank you everyone for participating, sharing and caring. Thank you for letting me be part of your group.

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@petitefitsmartfemale , Sorry for my delayed reply. I have been away. It looks like @lilyrock8 has answered your question about the K2. I am taking the same dosage she mentioned -- K2MK4 500 mcg and K2MK7 100 mcg. There are varying opinions about optimal doses. I follow Keith McCormick's suggested dosages in his "Great Bones" book. I like that his doses aren't excessively high. I am also petite at 5 ft. 1.5 in. , 125 lbs.

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