Hesitant to begin drug treatment for my osteoporosis

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!

There are many people, myself included, who have low bone density (-3.7) and not fractured. The T score is only one piece of information. Each person has to take into account their own factors, from illness to chronic disease, to body weight, frame, activity level, genetics…..the list is endless. The key is not to ignore it completely….whether you go the medication route or not, we all need to address the basics of nutrition and exercise. I am realistic enough to know that I may not be able to avoid medications forever. We are fracture free until we fracture, so it’s a risk one way or the other. I just hope to delay that intervention as long as I can and continue learning from others as new information arises.

Windy, you are one of the best resources I have found for when I do take that plunge! I hate that you have to be the one to lead us through that dense forest, but am so grateful for your pioneering efforts and willingness to share!

artiste181, welcome, this is a really good site.
I suggest that you try Tymlos and follow windshores as your guide. You can access all of her posts by clicking on a @windyshores.
My short opinionated rundown follows:
There are very few pharmaceutical options divided into drugs that build bone and drugs that preserve old bone.
The anabolics are Tymlos and Forteo, eliminating Forteo because you had side effects.
All of the bisphosphonates work by preserving older bone. I don't like the mechanism of action, so I don't even bother with the side effects. Except with Prolia, which I think the most dangerous of all of the meds, also the easiest to take. Bisphosphonates preserve older bone by preventing remodeling. Prolia has a different mechanism of action. It prevents the bone destroying cells from fully developing collecting what has been called a resevoir or a pool of those cells which mature when you stop the medication. So you have to follow Prolia immediately with medication to prevent extreme damage to your bones.
Then there is Evenity the newest medication (with a scary a black box warning for stroke and heart attack) begins as an anabolic and ends as an antiresorptive.
So I'm for Tymlos. It has an advantage in that if you have side effects you can reduce the dose with the windyshores method or stop taking the drug. It leaves your system withing 24 hours so you aren't trapped with a month of side effects.
Everyone will have a different opinion. I wish you luck with a tough decision.

artiste181,
Yes!!!!!!!!!!!! My osteoporosis is worse than yours!!!!!!!!!!!I have the worse case of osteoporosis that my doctor has ever seen!!!! And I was just diagnosed with it, and that is how it was presented to me!!!!! Talk about shock and devastation...My spine T-score is -5.6, so you should feel better about your condition. The thing is my doctor is not hearing me when I say I can't take prescription drugs and my system is very sensitive and I am very petite.....I have been sent to the ER many times for far less dangerous drugs than those for osteoporosis. I am 73 years old but have never had a fracture of any kind.... so should I worry since I am going against medical advice??? Going with the recommended pharmaceuticals for osteoporosis would be suicide for me especially in light of the serious possible, but very likely for me, side effects? I have no choice but, to go the natural therapy way to deal with it. On another note, I question the DEXA scan reading as there have been questions related to DEXA scan and petite woman. As we have less bone in the first place but are my bones are compared to someone who weighs and is much bigger than us petites?

Good luck with which way you decide to go with treatment!

@lolamarie I am also petite and for awhile hoped that DEXA's might not be accurate but they are adjusted for height and weight and in my case right on target since I fractured three vertebrae at -3.7.

I have a very limited diet and cannot tolerate most meds. I react almost instantly to the extent that docs think I might have an allergic condition called eosinophilic esophagitis. The list of sensitivities on my portal is ridiculous. I have had breast cancer, have lupus and maybe scleroderma, and atrial fibrillation with heart rate in the 190's. I could go on. I am not complaining, only showing you that even I could do the full course of Tymlos and my spine went to borderline from severe.

Many people also seem to do fine with Evenity,

I was alarmed at -4.4 but -5.6 is truly a reason to try meds in my opinion, as a person who has fractured. I hope I am not offending you. I just hope you will try. Tymlos' pen is 8 clicks. If you are nervous you can try two clicks and move up. I landed at 6-7 out of 8 and still did really well.

Many women take these meds with no side effects at all. But some drugs hang around in the system. Forteo and Tymlos are gone in a few hours (half life 1 hour).

Knowing what I know, I would be much more scared of fractures then meds. That was how I felt. I have trouble lifting, eating, breathing at times, and lots of pain. For awhile I needed help with daily living. It's not fun.

My mother had a compression fracture of her spine. We never knew whether she had osteoporosis or not. She died 20 years ago, but the spinal fracture ruined the last ten years of her life.
Unlike me, she was very petite. 🙂
Rather than live as she did in those last years, I have chosen the drugs.

Thank you for your open and honest response to her question. You give encouragement and hope dosed with reality and caution, backed by life experience and research. To someone newly diagnosed like myself, this is huge. You are making a difference!

At times my
allergist/immunologist and end have worked together in establishing treatment plan eg brand name drugs, benadryl and prednisone beforehand, epipen on hand and longer surveillance ay medical facility
There is also allergy testing of drugs in advanced allergy practices

windyshores....thank you for your response...no, you have not offended me but I very much appreciate your input. I feel for you because I can identify with much of what you have had to go through although our experiences are different. Honestly, when I first read your reply and you said you were able to take Tymlos, I had hope....a big hope....but it didn't last, only briefly. I am very very very scared as I feel if Tymlos could kill me, it will.

I really don't know what I will do right now as I'm frozen with fear....either way scared to take the drugs and also scared not to take drugs. Thank you, even though I'm too scared to act on it right now, but you've given me some hope.................