medication or not

[Frida22]

I have osteoporosis. Since I have a sensitive stomach my doctor recommended Prolia. I read about side effects of Prolia and I don't want to take it. What are the alternatives? I would prefer to not go on medication and continue with exercise, diet, calcium / vit D3 - but my bone density continues to decline (although it is declining less than in previous years). My lumbar spine is at -3.3; and femoral neck at 2.9. I would love to hear from others about their experience.

[Met00]

Prolia should never be prescribed without being certain of you being able to take a bisphosphonate if you ever have to stop Prolia; without such a relay drug, there's a very high risk of multiple spinal fractures! There is an annual bisphosphonate infusion, which your doctor could have suggested, as it bypasses the digestive system. However, many of us do prefer to manage our osteoporosis by more natural means, ensuring a healthy diet, taking a number of supplements, and regular exercise - the latter as high impact as is safe for you, together with progressive weight training and balance exercises. It is possible to improve bone density through exercise, but it does need huge commitment and the ability to include high impact and weight training.

[dcdream in reply to Met00]

I am doing the same as you suggest in your reply. My doctor suggested reclast too but I continue to stick with exercise, diet, etc.

[BlueJk in reply to Met00]

I too have osteoporosis. Calcium, vitamin D3 and exercise have slowed some of the bone loss but I’m still losing bone. I declined the Prolia because I read that if you stop it you are prone to spinal fractures. I opted for Boniva once a month and follow the instructions to the letter—-empty stomach, full glass of water. I use a combination of walking around the house, sitting upright or standing for the hour after taking. My sensitive stomach has not been affected so far. I also recently added Vit K2 as it plays an important role in bone metabolism. I hope you find the best solution for your individual situation.

[Met00 in reply to BlueJk]

I think the most effective way of building bone is to do regular and progressive weight-training. There's certainly evidence from Australia that this can work. Obviously it's still important to have a good diet and supplement where necessary, in order to ensure that our bones are getting all the nutrients they need. It also depends on the cause of your osteoporosis, because some medical conditions, for example hyperparathyroidism, will inevitably lead to bone loss, regardless of what you do to try to stop it, unless that underlying condition itself it treated.

[DinahM in reply to BlueJk]

Hello, BlueJk. I am considering monthly Boniva and wondered if you could tell me if it is a large pill. I have silent reflux and sometimes have difficulty swallowing large pills. I have read that people with acid stomach problems do better on the monthly dosage. Thank you.

[BlueJk in reply to DinahM]

Boniva is much smaller than my calcium citrate tablets . I do not find it hard to swallow at all. It’s an oblong tablet which I find facilitates swallowing. Hope this helps.

[DinahM in reply to BlueJk]

thank you

[dcdream]

I'm like you, seeing my scores get worse slower than in prior years. I've had osteoporosis for 10 years and continue with exercise, diet, weights, etc. My doctor suggested reclast this year but I am still holding off. I wish we had more options or newer drugs with less side effects. Good luck with your decision.

[BlueJk in reply to dcdream]

I just saw information on a new osteoporosis drug that is time limited. It is injectable but is taken for just 12 months, once a month, two injections. It’s called Evenity. I plan to ask my doctor about it and do some more research. Not sure if it’s right for me but will investigate.

[Viazoy]

Prolia destroyed me. I go my shots as prescribed, ate the "right" foods, faithfully did the exercises my physical therapist recommended, and all the rest of it. But after a few years the doctors said I needed a "drug vacation." It was a "vacation to Hell." Three vertebrae broke in short order leaving me in terrible pain for a long time. Even now it is disabling. I walk with difficulty. I am sorry I ever went near this drug!

[Frida22]

Thanks to all for your kind replies. I've resisted drugs since 2015 when I was first diagnosed, opted for exercise, diet, calcium / vit D3 and started K2 a couple of years ago as well. But due to the ongoing decline, drs are recommending drugs again. Stuck between fear of drugs and their side effects and fear of fracture. I've had one fragility fracture (in 2015, wrist). Does anyone know about spontaneous fracture? What are the risks - do you have to be at -4? Can anyone recommend exercises that target the lower lumbar spine and hips. Also any recommendations on oral prescriptions that can be taken less frequently... once a month?

[Fruitandnutcase in reply to Frida22]

it might be worth f8nd8ngfinding a physiotherapist who is very experienced in working with people with osteoporosis before you start any exercises. I’ve got an amazing Pilates teacher who is also a physiotherapist with experience in working with osteoporosis patients and the exercises we do make a huge difference.

Our number one rule is that we never do anything if it hurts - even if we’ve done it before and even if our teacher has told us to do it - we never ever do anything that causes pain. Exercises may require a lot of effort but never pain.

[FearFracture]

Before taking any osteo-meds you need to rule out “secondary” causes of osteoporosis and have you bone turnover markers checked. If you go to my bio, you will find 3 links, 2 of which are related to testing and bone turnover markers and the other is a diet related osteoporosis pdf.

Also, regarding going on Prolia ( I have not used Prolia), when your doctor suggested that you start Prolia infusions what was his/her plan? meaning for how long? and what relay drug did he/she intend for you to use when you stop prolia? If your doctor didn’t have a long term plan you need a new doctor because you can’t just stop taking Prolia.

[Frida22]

Hi FearFracture - yes, I did have tests to rule out 'secondary' causes - there are none. Re: bone turnover markers - not sure what that means? I have had 3 bone density tests starting 2015 - the last one spring 2022. There is decline re: t-score and bone density. However, because I moved cities they say they can't compare results because the scan was done at a different hospital (??!!). Re Prolia - this was my first visit to a new specialist (a reumatologist - with 'an interest' in osteoporosis. Dr. scheduled a follow-up visit. Apart from a list of meds, Dr. gave very little to no info re: different meds, aside effects, risks, outcomes. Started by asking why I didn't take meds - I expressed my preference for exercise diet, calcium/Vit D - and fears re: side effects of meds, and my sensitive stomach. Then the dr. said that Prolia would be a good option. I'm assuming any talk about a long term plan is for a future visit - so thanks for the heads up - it will really help me to be more prepared for the next visit.

[Mark_ABH in reply to Frida22]

HI Frida22, bone turnover markers are chemicals in your body that can be tested to show whether you are losing more bone than you are creating. A specialist might order these tests to show what kind of progress you are making with treatment. A primary care-type doctor probably wouldn't order them.

Prolia typically is a fairly long-term treatment. You take it twice a year by injection at a doctor's office. As other users have pointed out, it's important not to just stop taking it as that can cause a rapid decline in bone density and increase in the risk of spine fractures.

When you have had a bone density test, did your doctor also give you the results of your "FRAX"? This is a fracture risk assessment tool that estimates your risk of fracture based on a variety of factors besides your bone density. It often comes with your T-score. American Bone Health has a similar tool called the American Bone Health Fracture Risk Calculator™, but it is not recommended for people outside the U.S. (I see you are in Canada), though you are welcome to try it out. americanbonehealth.org/calc...

[HeronNS]

Here are a couple of links which you may find interesting. One is my story which may give you some ideas how to care for your bones whether or not you opt for medication, and the other lists secondary causes of osteoporosis so you can double check that everything was covered in your tests. One is always concerned when there's continuing decline even when action to mitigate OP has been taken.

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

[Crawldad]

Good Morning. I have terrible time taking medication. See a specialist in osteoporosis. Many different drugs available. Depending on what physicians fractures are worse then the drugs. We lasted until our 70s without a bone density problem. A lot of women on this website much younger and don’t want to be taking medications for decades. I found fracture I took longer to heal compression fracture never completely heals and puts you at high risk for another spinal fracture. I lost two inches and hard to stand up straight. Working on standing straight had walker now trying to lose cane. It really is a evil condition. Best to you and whatever decision you I make.

[StuyTown in reply to Crawldad]

I had 3 spinal compression fractures, before I finally decided to take Prolia. It was a hard decision and took me many years of waffling and trying all the other things we all know about. So far, no bad reaction to the shot. I did learn that its very important to have a full mouth xray before starting Prolia.. I understand that I must choose an alternative right away before stopping Prolia. I must say that spinal fractures are extremely painful, debilitating and affect daily living now and in the future. I am also about 3 inches shorter, use a cane by day and a walker at night. Good luck in making the decision that feels right for you.

[bluemooner]

I've been on Prolia for 6 years and osteoporosis is now ostopenia except in my hip. I had a hyperparathyroid gland removed last February. Calcium and parathyroid now normal. I have no negative side effects from Prolia. Will try to transition to? Suggestions?

[bluemooner]

I just transitioned to Reclast two daysAfter about 6 plus years on Prolia. I'm hoping for the best. I also had a hyper thyroid condition that my first doctor never diagnosed. I had that removed and it seems that that has helped but after hearing about all the bone loss after you go off of Prolia and not wanting to fracture, I decided to go on to Reclast along with my endocrinologist. Theoretically, I won't need to go back for one year. Also pretty active playing tennis and want to continue. I am hoping for the best. Good luck.