What if you cannot tolerate any osteoporosis drugs?

Posted by tkdesign @tkdesign, Apr 16 8:25am

My bone density is quite low in y 50s, but I have tried an failed every class of drug out there. The side effects were so severe I could not function. I'm not sure if it's genetics, or that I"m very low weight/small size person, or something else. I have a connective tissue disorder overall, and despite being on HRT for a few years now, it's done nothing to stop bone loss in my spine. Anyone else in this situation? I feel so hopeless about a likely short lifespan.

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I have hypermobility syndrome and fibromyalgia. I am super sensitive to almost all medications. Now on Forteo, I am noticing bad muscle weakness and joint pain. I wonder if my connective tissue problems are interacting with the medication. Or, could it be high calcium? I get about 1000 mg of calcium a day from 180 mg Algaecal Plus and the rest from food. Forteo raises the amount of calcium in the blood. I don't know much about my hypermobility, but joined in since some of you also have connective tissue problems.

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@tkdesign

Oh so sorry. That sounds so awful 🙁 I get angry to hear this...these drugs can be dangerous and not enough care is given in explaining risks.
I can share some drug horror stories...not osteoporosis drugs, but I suffered some really terrible outcomes from steroid injections given for pain from an injury. I lost teeth, I developed new allergies, got a fungal infection, ended up with stomach surgery...nightmare. I don't think drs know enough about what they are prescribing...some do, but you really have to do your own research I found.
And they don't ever consider size, weight for doses, or male vs female, etc.
I started hormones number one to help at least slow bone loss, because i knew i already had it. I knew I had a hard time with drugs. I wish I'd started sooner really...I think hormone imbalances were affecting my bone/muscle for years even before menopause symptoms really kicked in. They don't teach women well about any of this! Most drs are severely misinformed or have no idea how hormone loss affects every body system.
HRT helped me with sleep, energy, brain fog, heart racing, lowered my cholesterol..the works. But it was a rough road finding the right mix. And I may need to change it again down the road. I've read it's beneficial to start at any age, even if only a very small dose. You start small, work up. There's so many great videos and experts and forums and podcasts out there for menopause, and they do address many topics regarding this. But certainly it's not for everyone.
No thankfully I've not had a fracture...I hope I never do. But I do have a connective tissue disease with weakened fascia, muscle, bone, dura of the spinal cord. I've suffered chronic pain since my early 40s. I had spinal surgery last fall for a nerve root cyst impacting my bladder, causing pain, and pain from that trying to heal. It's hard to stomach taking another medicine to add to the pains you've suffered for so long.

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@tkdesign
The refusal of much of the medical community to allow for modified dosages is frustrating. It would be too expensive for the drug companies (according to my retired MD sister-in-law) to do the research so they don’t. It’s ridiculous to prescribe the same dosage to a 100 pounder that you do with a 150 pound person. I believe it is malpractice. Glad you are getting some relief with the HRT’s. Hang in there! I too was given a laundry list of medications over the years that undoubtedly contributed to my bones loss; we just didn’t know.

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@tkdesign

I hope it helps you in some way. I had a hysterectomy so only use a tiny dose of progesterone and luckily don't have to deal with any bleeding issues. Yes good to start the estrogen slowly, see how you feel. I would give the P/E at least 3 mo or more first and adjust that before adding T...otherwise it's hard to know what is doing what I found. Every time you change a thing, best to try 3mo or so to see how your body adjusts. It really is frustratingly slow. I'm much younger, so probably the overall doses you would use would be much smaller. I just learned about a supplement Resveratrol, that seems to be helpful in building bone. May try it. I've been using collagen...not done a thing for me. I think people like outselves with connective tissue problems may not process or use collagen correctly. Or maybe there is some inflammatory process that is interfering. I've got the SI joint pain thing too! The muscle and connective tissue loss from aging only compounds things. For good menopause info, I like Dr Louise Newson's videos on YouTube. There's a great podcast on apple podcasts called "Dr Streicher's Inside Information" you should check out too. Dr. Lauren Streicher is US based, but covers many topics for all ages of women.

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Hi tk design. Wow that’s such a coincidence that you mentioned both the SI joint pain and dr Newson. Her clinic is in fact the one I am dealing with. I am one of their clients. She has many doctors working with her . They are following me up with blood tests and video call in three months from my start. Also I agree about the muscle and tissue loss. It’s so hard for me to exercise like I used to now, without aggravating my SI joints and being in pain for days or weeks. I manage to get a walk in every day if I have slept ok. Plus I have an exercise mat etc in my home. I can’t really wait for too long before I begin the estriadol though as my OP is quite severe in my spine and I don’t want to fracture. I am quite small framed so only weigh 48 Kg and at 168 cms tall that’s a low weight. Keep in touch

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@lhankins

@tkdesign
The refusal of much of the medical community to allow for modified dosages is frustrating. It would be too expensive for the drug companies (according to my retired MD sister-in-law) to do the research so they don’t. It’s ridiculous to prescribe the same dosage to a 100 pounder that you do with a 150 pound person. I believe it is malpractice. Glad you are getting some relief with the HRT’s. Hang in there! I too was given a laundry list of medications over the years that undoubtedly contributed to my bones loss; we just didn’t know.

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Follow the money. Not just weight adjustments, but getting the same research dollars for women's health overall is a challenge. Now...likely no dollars in the US.

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@drsuefowler

I have hypermobility syndrome and fibromyalgia. I am super sensitive to almost all medications. Now on Forteo, I am noticing bad muscle weakness and joint pain. I wonder if my connective tissue problems are interacting with the medication. Or, could it be high calcium? I get about 1000 mg of calcium a day from 180 mg Algaecal Plus and the rest from food. Forteo raises the amount of calcium in the blood. I don't know much about my hypermobility, but joined in since some of you also have connective tissue problems.

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I keep being told to take more calcium, but forteo or tymlos raise calcium levels. So I'm still waiting for an explanation of why it might not be better to reduce calcium intake on these drugs. Love to hear the science of how this works!

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@tkdesign

Follow the money. Not just weight adjustments, but getting the same research dollars for women's health overall is a challenge. Now...likely no dollars in the US.

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Amen! It has been said before on this site. If this were a disease impacting men at these numbers; it would be solved!

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@tkdesign

I keep being told to take more calcium, but forteo or tymlos raise calcium levels. So I'm still waiting for an explanation of why it might not be better to reduce calcium intake on these drugs. Love to hear the science of how this works!

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On Tymlos, I had to decrease my calcium intake, because my 24 hour urine test showed way too much. I had three tests taking different amounts of calcium supplements. The only one that was even close to normal was the one with no supplementation. As recommended by my endocrinologist, I am trying to get calcium from food. I also have read that in Europe, the daily calcium requirement is 700 to 1000 mg per day, unlike our 1200 mg here. We keep getting mixed messages. My PCP pushes getting 1200 mg, because that is what is recommended here.

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@drsuefowler

On Tymlos, I had to decrease my calcium intake, because my 24 hour urine test showed way too much. I had three tests taking different amounts of calcium supplements. The only one that was even close to normal was the one with no supplementation. As recommended by my endocrinologist, I am trying to get calcium from food. I also have read that in Europe, the daily calcium requirement is 700 to 1000 mg per day, unlike our 1200 mg here. We keep getting mixed messages. My PCP pushes getting 1200 mg, because that is what is recommended here.

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Yeah that is what i am suspecting needs to happen. It makes no logic to say take more when it raises your levels. I understood when my levels were low on no drug to take more calcium...but now, i would assume this needs adjustment.

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Algaecal and Strontium Citrate has case studies and small studies of beneficial results. Can also get this type of product from other sources for cheaper. But very positive reading.

Marodyne low frequency vibration plate as recommended by Margaret Martin 3x per day can make results even better

Looks like using weights amd resistance bands are just as good in terms of maintenance or percentage increases

Funny how doctors do not promote this. Crazy!

Notice how the results of Algaecal etc or HRT are about the equivalent of bone drugs anyway.

SO KEEP GOING!!!

Don't give up.

Adjust other things. Improve your diet drastically. Remember that we don't absorb as much nutrition as we get older.

We know being underweight is a correlate so get out of that zone

Cut alcohol and coffee, or balance and reduce eg coconut oil in coffee to reduce effect of leeching calcium and other minerals and proteins out of your bones

Improve your sleep eg 5 teabags chamomile tea and listen to rain noise in cabin

DHEA from orgasms, would you believe, apparently helps with a percentage increase

Amazing what improvements studies show work.

Think the HRT is excellent Baik et al 2024 say good to stay on it long term with patches and vaginal applications for all around longevity including cancer protection

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@tkdesign

I keep being told to take more calcium, but forteo or tymlos raise calcium levels. So I'm still waiting for an explanation of why it might not be better to reduce calcium intake on these drugs. Love to hear the science of how this works!

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Vitamin K2 takes out excess calcium from your blood after you have made it available to your bones

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