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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@tiny28

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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You need to increase your BMI. You're not eating enough to provide nutrition for your bones and the rest of you. Sounds urgent.

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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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@drsuefowler I, too, have very high urine calcium that was unfortunately doubled while on Tymlos-and I had to stop taking it. I tried a low sodium diet but that hasn’t helped. I am now going to try a plant based diet and low sodium. I have read studies recommending these dietary modifications-but am disappointed that the low sodium has not helped me, but it helps many, as does replacing animal protein with plant based protein.

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@sally123

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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I've been using the algae cal for years and never helped. It's been hard for me to do weights as I have had spinal nerve root disease a long time...now I have CSS and the littlest amount of weight bearing causes terrible pain all over. Sleep always hard...I walk much as i can, am in PT to help strength and doing some manual therapies for soft tissue release. Even the hormones took me couple years to find a good balance, but it's not stopped bone loss. Added collagen and more protein to my diet too to try to build up more muscle and weight, but it just never seems to add on. I get so frustrated. I have poor absorption of calcium i guess...i had low urine Cal taking 1200mg a day, so i upped it to 1500 and that improved, but trying Tymlos I asked if i should lower that again and they said no, so I was so confused why.

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@marymj7

@drsuefowler I, too, have very high urine calcium that was unfortunately doubled while on Tymlos-and I had to stop taking it. I tried a low sodium diet but that hasn’t helped. I am now going to try a plant based diet and low sodium. I have read studies recommending these dietary modifications-but am disappointed that the low sodium has not helped me, but it helps many, as does replacing animal protein with plant based protein.

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I've not found type of protein making much difference on energy levels or strength.

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@marymj7

@drsuefowler I, too, have very high urine calcium that was unfortunately doubled while on Tymlos-and I had to stop taking it. I tried a low sodium diet but that hasn’t helped. I am now going to try a plant based diet and low sodium. I have read studies recommending these dietary modifications-but am disappointed that the low sodium has not helped me, but it helps many, as does replacing animal protein with plant based protein.

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There are so many contradictory dietary recommendations. I was on mostly a
plant based diet, but recently added more dairy when my endo suggested I
get most of my calcium from food. I'm thinking Dr Doug Lucas even
recommends eating meat to get enough protein for bones. Others think that
meat is the worst thing you can do.

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@tkdesign

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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On Tymlos, I went from taking 1000 mg of calcium and had a 24 hr urine test which showed way too high. U cut back to 500 mg and still way high. I then took no calcium supplement and the results were just a tad above the normal line. These medications really do increase calcium levels.

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@drsuefowler

There are so many contradictory dietary recommendations. I was on mostly a
plant based diet, but recently added more dairy when my endo suggested I
get most of my calcium from food. I'm thinking Dr Doug Lucas even
recommends eating meat to get enough protein for bones. Others think that
meat is the worst thing you can do.

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I know-figuring out what to eat and not to eat is exhausting. I don’t want to take hydrochlorathiazide for the high urine calcium-but that’s the treatment often used.

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@drsuefowler

There are so many contradictory dietary recommendations. I was on mostly a
plant based diet, but recently added more dairy when my endo suggested I
get most of my calcium from food. I'm thinking Dr Doug Lucas even
recommends eating meat to get enough protein for bones. Others think that
meat is the worst thing you can do.

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Well of course a guy will recommend meat. And how does type of protein correlate with bones? Maybe it's more the collagen component, and I think genetically people process all this differently. Maybe in the far future, if humanity is still around, there will be medicine more tailored to the individual.

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@marymj7

I know-figuring out what to eat and not to eat is exhausting. I don’t want to take hydrochlorathiazide for the high urine calcium-but that’s the treatment often used.

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Ok, if you have to take another drug to combat another drug side effects, that is crazy. Then there is something wrong with the first drug. Given people's comments on these drugs, I find it hard to believe that only 11-15% of people in their trials had high calcium and nausea as side effects. I've yet to hear from someone who did not have that....and then, why not? There definately should have been some published guidelines on calcium intake too.

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@drsuefowler

On Tymlos, I went from taking 1000 mg of calcium and had a 24 hr urine test which showed way too high. U cut back to 500 mg and still way high. I then took no calcium supplement and the results were just a tad above the normal line. These medications really do increase calcium levels.

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I'm disturbed that my dr did not even mention that to me. I was told to increase my calcium intake as my urine levels were low...though just random urine, didn't do 24 hr...is that better? But now I start Tymlos, I don't know what to do.

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