1. < Osteoporosis & Bone Health

Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14 6:30am

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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grammy9 | @grammy9 | May 16 11:01pm
In reply to @lolamarie "No I'm not doing anything yet because I just got diagnosed, and the doctor wants to..." + (show)
@lolamarie

No I'm not doing anything yet because I just got diagnosed, and the doctor wants to run some more tests, and I'm still in shock, sort of. I've been checking things out...but whatever I do, I won't rush into anything... after all, I did not get this way overnight and there isn't a quick fix.

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So true! I have been on Fosamax since I was 52. I was diagnosed with osteoporosis at 50. I have never broke a bone. I just requested a scan because I was short and had early hysterectomy. Now I am 61 and they say since my spine is -3.2 I need to do one of these injections. I wish I could be little older before I had to start something but I don't want to break something either. The decision is so hard!

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lolamarie | @lolamarie | May 17 10:55am

Thank you windyshores, what you shared with me, is encouraging and gives me hope!

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artistel81 | @artistel81 | May 18 6:44am
In reply to @windyshores "I wrote a really long response and lost my internet connection and it disappeared. I will..." + (show)
@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 just now seeing responses to my post. I so appreciate your thoughtful and detailed experience and advice. Yes, it is frightening to think about both the risks of treatment vs non treatment. “Between a rock and a hard place” seems to be the appropriate mantra for those of us trying to decide on treatment. Again, thank you, I have much to think about.

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artistel81 | @artistel81 | May 18 6:59am
In reply to @lolamarie "artiste181, Yes!!!!!!!!!!!! My osteoporosis is worse than yours!!!!!!!!!!!I have the worse case of osteoporosis that my..." + (show)
@lolamarie

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!

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Oh my, I can certainly commiserate with your concerns. I too am very thin, have been all my life. I am also someone who seems to have side effects from most drugs. Even naproxens make me nauseous so i am so fearful of much stronger prescription drugs. I wish you the best as you explore non drug choices..

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1 reply
artistel81 | @artistel81 | May 18 7:07am
In reply to @lolamarie "windyshores....thank you for your response...no, you have not offended me but I very much appreciate your..." + (show)
@lolamarie

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.................

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It seems we are in a similar place with decision making. Many varying experiences, each of us unique of course. Such important information here to help us make informed decisions. In the end, I am always a gut making decision-maker. I Remain open and listening, and not sure yet what my Gut decision will be.

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windyshores | @windyshores | May 18 9:13am

I really hope that anyone with DEXA's in the -4's or even -5's will consider meds. I have written enough about what it is like to fracture. You don't want any! And they happen from coughing, twisting etc. not just major falls. Good luck to all....

ps adding that most of us can find a medication that is not THAT bad 🙂 It might take a few tries, or dose adjustments.....

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ripley | @ripley | May 18 11:11am
In reply to @artscaping "Good evening, @grammy9. After two years of Tymlos, I was told to begin Prolia. That was..." + (show)
@artscaping

Good evening, @grammy9. After two years of Tymlos, I was told to begin Prolia. That was a huge mistake for me. So, my new Mayo endocrinologist changed the option to Fosamax (alendronate). I will complete two years next month, so I have scheduled a Dexascan. I am anxious to see how well my bones are performing.
May you have happiness and the causes of happiness.
Chris

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What was the process for you to be accepted at the Mayo for your osteoporosis and how soon were you able to get an appointment. I live in MN and Rochester is a few hours from me. Also, what was your experience with Tymlos and Fosamax? thanks.

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1 reply
celia16 | @celia16 | May 18 1:50pm

I’ve been reading this thread and am truly amazed. You all are dealing with so much! How were you diagnosed? I’ve never had a doctor, gyno, PC, orthopedist, etc. ever mention getting tested for osteoporosis and I’m early 60.

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anitayuyu | @anitayuyu | May 18 4:27pm

I have severe ideopathic osteoporosis which accompanies axial spondylitis and have broken my spine twice. My neck is 'predicted' to break any day. I can not stand the side effects of bisphosphonates, and if something makes me feel bad, I do not believe it is "good" for me.
One thing I have learned, and I think you are learning, is that the applied medical field has still not mastered the science of nutrition nor cell biology. And if you want to heal bones, you need to understand those things. The pituitary, the pineal gland, thyroid, parathyroid, sex glands, liver: all known to play vital roles in bone formation and breakdown. Here's some helpful trivia: avoid NSAIDs unless they are your only alternative to control the condition. They inhibit a key trigger for new bone growth. Vitamins D & K should be taken 12 hours apart. Low thyroid contributes to osteoporosis. Super liars in this country about thyroid disease! Blood test is no good. Must test levels on tissues with a saliva test. Or use basal body temp first thing in morning abd uf you are cold, you are low. I was told for years my levels were OK but it was because I couldn't escort thyroxine into my cells with the needed transthyretin so I had plenty remaining in my blood. Any trauma like you have had can also cause sudden onset Hashimoto's also. I self med with Thyroid Gold dessicated cow thyroid gland for past 12 yrs from Natural Thyroid Solutions.
Also- calcium supplementation must be done through food as supplements have been directly linked to lung and bowel cancer. I boil my eggshells and grind finely in a coffee grinder, and sieve further to get the finest particles. (I can sprinkle this on everything from peanut butter sandwiches to mashed potatoes to salads with my parmesan and get plenty of a healthy-form of calcium.) The difference in nutrition is noticeable in a couple of weeks, if right for you. I went from not being able to straighten up at age 57 to jumping around like a 6-yr old first thong in the morning in 3 weeks when I got with the right nutritionist. I also have learned if your bones won't hold you up, you really need to strengthen your muscles and ligaments evenly to sort of hold you together. Learning to move slowly and thoughtfully is indeed difficult to master but can be done. Also consult a kinesiologist for assistance with proper stretching and exercise that uses the very latest knowledge of safe strengthening techniques. Strength up, pain down, brain happy. Best wishes.

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windyshores | @windyshores | May 18 7:05pm

@anitayuyu are bisphosphonates the only medication you have tried?

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