What if you cannot tolerate any osteoporosis drugs?
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.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
You need to increase your BMI. You're not eating enough to provide nutrition for your bones and the rest of you. Sounds urgent.
@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.
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.
I've not found type of protein making much difference on energy levels or strength.
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.
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.
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.
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.
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.
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.