As if MS wasn't enough, I have osteoporo... - My MSAA Community

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As if MS wasn't enough, I have osteoporosis

jkdavid99 profile image
11 Replies

HelloAs if MS wasn't enough, I now have osteoporosis. Which could be why I fell and broke my shoulder in December. My primary doctor has put me on boniva. So again I am afraid to take it.

Side effects just don't sound l ike fun . I am only 53.

I am taking vitamin D and eating 2 tums daily for calcium as recommended by my primary doctor.

I have also never drank milk so there is that. I have never liked milk.

Any experience with boniva

Thank you

Jenny

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11 Replies
CatsandCars profile image
CatsandCars

I'm very sorry you have osteoporosis. I don't have any experience with Boniva, but I thought I would mention that I learned on this forum to take vitamin K2 with vitamin D and calcium so that it can be absorbed.

Frances_B profile image
Frances_B

You also need to take magnesium with Vit D, as well as Vit K2. These days a surprising number of people are magnesium low/deficient - two important likely causes are not eating enough of the right foods to get enough magnesium in your diet, and intensive broad-acre farming depleting soil reserves of minerals thus produce having lower level of minerals as well. Taking Vit D and calcium won't improve things much as you need a balance of the other essential minerals which are part of Vit D metabolisation. The info on the follow link is pretty much a reproduction of an excellent article from Dr John Cannell, who did a lot of research into Vit D and ran the Vit D Council (which sadly now seems to have disappeared off the face of the planet..........)

yippy.green/topic/vitamin-d...

Talk to your GP or physiotherapist about doing some carefully thought out load bearing exercise - that help increase bone density, but obviously as you have been diagnosed with osteoporosis it needs to be done with caution and under supervision.

kycmary profile image
kycmary

I don't know anything about Boniva & my pcp has been trying to get me on one of the bone building drugs for a while. I am not thrilled with the side effects either so I haven't started one & don't think I am going to. Mary

agate profile image
agate

Hi, Jenny,

For years my doctor was urging me to take one of the osteoporosis drugs even though my bone-density scans showed only osteopenia. I was still thought to be at high risk for an osteoporotic fracture. Like you, I didn't like the idea of this rather weird drug that is known to have side effects.

Then I was found to have had a spinal fracture though I'm not sure when that happened. It's possible to break bones and not know it. I've known people with osteoporosis who have had a fracture when they were doing nothing.

So I finally caved in and started taking Fosamax. I've been taking it for over a year now and so far, no side effects. I like to think I'm preventing the condition from getting worse. A few years ago I began to get a curved spine (hunchback or "dowager's hump") and I hate being stooped over. Maybe the Fosamax will keep that from getting worse.

I think Boniva is like Fosamax but you take it only once a month, and if the oral med gives you side effects, I believe there's an IV version.

It's entirely up to you, of course, but osteoporosis is definitely no fun, and it doesn't just sit there quietly. It gets worse.

Elizt3 profile image
Elizt3

I had osteopenia for 15+ years and just dropped to osteoporosis last year 😕. Unfortunately I’ve had to take prednisone for two years because of another autoimmune condition (so I’m assuming that’s the reason for the dip in bone density?). I started on Actonel a few months after starting the prednisone. Had a repeat bone density test a few months ago and the results were not improved. Not sure if Actonel is supposed to hold where one is at or help with improvements?

bookish profile image
bookish

Hi, I would agree that you need magnesium, which is probably more important than the calcium. You hopefully know what level your vit D was at before you started the supplement so that you can retest and make sure the level has gone up appropriately. We all vary enormously in our absorption rate, some needing a far higher dose, but you do not want to take vastly too much either. The prescribed dose may not be right for your needs and could need adjusting. Do you supplement vit B12 either orally or as injections? If not please don't before testing, but it would be a good idea to check B12. Needed for bones as well as nerves, and commonly low with MS (or deficiency confused with MS). A serum test alone cannot rule out a deficiency but it is a good place to start, preferably with a serum folate at the same time.

erash profile image
erash

same new diagnosis osteoporosis and started on Prolia. All have list of side effects. Search for my post. Advised add K2 to my D. Good luck!

Greentime profile image
Greentime

I had osteopenia for years and then osteoporosis with varying degrees of severity. Now I have two spinal fractures and severe risk. Years ago I took Fosamax, which is in the same family as Bonita. No side affects an it helped, but I was on it too long. A drug holiday or break is required after a few years due to risk of femur fracture. Then I didn't go back on it until about a year ago. Still waiting for bone density scan. But....endocrinologist said the goal is not to improve density, it is to keep it from getting worse. Yikes! I wanted to tell you that I take the once per week Fosamax pill and have never had any side affects. Good luck.

ms23 profile image
ms23

Has anyone been prescribed Forteo? It is said to actually build bone, not just prevent osteoporosis from getting worse. The pharmaceutical company has a copay program that will cover the cost if one qualifies. It is quite expensive but might be an option for those who qualify for the free program. My mom took it for a year or two and did well, but went back to Prolia when she no longer qualified for the program.

Brindisi1 profile image
Brindisi1

Prednisone, age, hormones, poor absorption, etc contribute. Vit d is needed but you also need specific calcium amount , k2, magnesium, boron vit c etc. See healthy bones healty you by Lara pizzorno. In depth book- her first one. Your Bones good and not so technical. Please read re pharma meds. can also do weight bearing yoga 12 positions by dr Loren Fishman.

On the program & looking for positive results. Good for whole body . Did get + results but next yr 6 doses of prednisone. Working on new results.

Using OTC supplement she mentions.

The Algecal also has awesome facebook

Best for your journe

jkdavid99 profile image
jkdavid99

Thank you everyone for the advice. I have been reading everything. I have an appointment with my primary on Tuesday to talk to him about what I have found. I am just not ready to commit to a certain medicine. I know I am in pretty bad shape for my bones I just need more time so I can continue to research. Thank you all for responding. I wish there was an easier solution to this.

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