Osteoporosis treatment--what are you taking?

[OzarksRider]

I have osteoporosis and took alendronate for 5 years with good results and no side effects. I’ve been on a drug holiday for 2 years, but from my latest bone mineral density test results it looks like I’ll need to resume treatment. So I have some questions for those of you on treatment for osteoporosis:

1. What drug are you taking?
2. What side effects have you had, how severe were they, and how long did they last?
3. If you were on a drug holiday and resumed treatment, did you go back to the same drug or did the doctor prescribe a different drug?

I’m especially curious about the last question because at my last appointment, my doctor said that if I needed to resume treatment it would be a different drug. I didn’t think to ask him which one and why. I’ve researched treatment guidelines, and I haven’t found any recommendation or even suggestion to change drugs after a holiday. Bisphosphonates appear to be the first line therapy, even after a drug holiday. I did well with alendronate so I don’t see any reason to change drugs and risk nasty side effects.

[sparkygrace]

A few months ago, I wrote about my experience with Fosamax. I suffered a debilitating side effect after only took one dose. The Fosamax caused back spasms so bad I couldn’t breathe and I went to the emergency room. It took nine days for the spasms to abate. My sister, a dietician, recommended a natural supplement to support bone health. I may consider another drug at some time, but am so leary of what might happen.

I’m glad to hear you had no problems with alendronate. Did the doctor say why he wanted to have you take a different drug?

[NaturallyHappy]

Could you share what your sister recommended? Thank you.

[sparkygrace]

She thought this supplement was the best for bone health:

PERQUE Bone Guard Forté | PERQUE

[NaturallyHappy]

Thank you!

[Mallard]

I am 70 ‘apparently’ could break a hip just falling down. Sigh.
I did try two different drugs about 4 years ago. Terrible muscle pains with one (oral) after 2 weeks and after reading about side effects from the other (IM) decided not to continue.
I started taking Calcium and Vitamin D3 at max dosage suggested by my trusted pharmacist.
I just had my bone density xrays a month ago and my bones have not gotten less dense /worse. Doc was super pleased and I’m to just continue with Calc/D3 and don’t need another scan for 2 more years. “And please don’t fall off those horses” I have started wearing an air vest on the youngster.

[2DogsFarm]

I moved toward osteoporosis from osteopoenia this year
Oncologist wanted me to take the injectable Prolia & I agreed to the 1st injection. But the chance of awful side effects, femur fracture, dental issues, made me refuse the 2nd.
That was over 5yrs ago.
I get bone scans annually.
GP has me taking 4KU D3 & recently added B12.
So far so good with bone density for hips, but spine has me now 2" shorter.

[OzarksRider]

@sparkygrace

A few months ago, I wrote about my experience with Fosamax.

I remember reading about that. A friend had a similar experience. She fell off a step ladder and broke her leg in multiple places, and that’s when she was diagnosed with osteoporosis. Her doctor prescribed alendronate, and she had muscle aches and bone pain that persisted for weeks after only one dose. She now takes Prolia and is doing ok with that. But I have an even worse story involving the sister of another friend. She had an injection of Reclast and died three days later of kidney failure. My friend absolutely refuses to take any bisphosphonate because of that.

I’ve heard too many stories from people who have had firsthand bad experiences with osteoporosis drugs, so I don’t think they are as benign as the drug companies would have us believe. That’s why I’m very leery of switching to another drug when I already know I can take alendronate without problems, and according to all the literature, it’s one of the first line drugs to treat osteoporosis.

I didn’t think to ask my doctor what different drug he would prescribe and why, but I’ll definitely have a conversation with him before I agree to anything. And because of what happened to my friend’s sister I’m strongly disinclined to take any injectable drug. At least with alendronate you can stop taking it immediately.

[sparkygrace]

I agree the side effects are downplayed. The medications do help the majority of users, but for those who have problems, the drugs are horrible.

[NaturallyHappy]

Isn’t that why the kidney function is (supposed to be) checked before horses get Osphos?? How awful!!!

[RMJacobs]

I just had my first dexa scan in about a million years (actually, probably since 20 or 25 years ago). I was thrilled when the result was that I had no more risk of fracture than a much younger adult. I’m nearly 66. I was probably going to refuse Foxamax as @sparkygrace’s experience scared the hell out of me. Now I don’t have to worry about it for a few more years.

Rebecca

[sparkygrace]

I’m jealous! My osteoporosis had many causes. I’ll petite, fine-boned, and used proton pump inhibitors for years. All are factors. None of my sisters have osteoporosis.

[Foxglove]

Prolia --works for me. No side effects.

[sparkygrace]

My new doctor suggested Prolia, but also encouraged me to do some light weight training. Long ago someone suggested vibration, so maybe standing on the theraplate would work.

[Foxglove]

@sparkygrace --humm, could be my age (70+) but was told by orthopedic dr that nothing was going to increase my bone density, however, Prolia would slow the bone loss (not rebuild, just slow) —as to weight training, I lift daily 40 min (upper body, lower body, barre, Pilates, yoga --combination of those daily for 40 min, and 30 of cardio). Perhaps it slowed my loss of bone density, but again, I was told by the orthopedic dr that nothing was going to increase my bone density. Again, could be my age.

[sparkygrace]

Your doctor may be correct. I am 69 and in good shape, not overweight. You are certainly doing way more than I do! Being gym-phobic it’s been a non-starter for me to do formal weight training. I also just can’t get over my gun-shyness after the horrible experience I had with Fosamax.

Things are complicated too since I have been diagnosed with a rare blood cancer. I need to have a good talk with an endocrinologist to make sure there will be no drug interactions or problems.

[Foxglove]

Sounds like u have a lot to deal with! I don’t go to a gym—always felt too judgmental–with me being the judge! I have my spin bike and a lovely set of weights, a mat, yoga stuff in my basement with a big screen TV. I follow a FB group that posts a monthly calendar that suggests daily workouts–generally 10 and 20 min classes one accesses on the web. I ride my spin bike for 30 min then do the other suggested classes. I enjoy my workouts. No worries about what to wear, my red face, or if I have to pause to go to the bathroom. It works for me! Then I change clothes and head to the barn!

[sparkygrace]

That sounds perfect. Now if I could only be motivated…I am lazy about regimented exercise. I used to be an avid tennis player and was super fit. That was fun. I tend to get bored easily, so I need more mental stimulation when exercising. I do ride and care for my horses, but that’s not enough.

[hoopoe]

@sparkygrace

Things are complicated too since I have been diagnosed with a rare blood cancer. I need to have a good talk with an endocrinologist to make sure there will be no drug interactions or problems.

absolutely, Your Oncologist or Endocrinologist should be the one to manage whatever drug is suitable. Many Chemos are contraindicated. There are also contraindications for where you are in your management cycle; white count , anemias clotting factors etc.

[sparkygrace]

Thanks. I’m only at the beginning of this journey. Next month I will see my oncologist to discuss the resultts of the bone marrow biopsy I had yesterday, so we also can discuss the drug issues.