Advice on treatment for osteoporosis. - Bone Health

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Advice on treatment for osteoporosis.

16 Replies

Hi, I’m new here and this is my first post. I was diagnosed with osteoporosis in 2015 after I sustained a right hip fracture following a fall. DEXA scan showed T.score -3.1 spine; -2.6 femoral neck; -2.9 left hip. I was started on Adcal-D3 and alendronic acid. I stopped the Alendronate after 6 months due to aches and pains, and fatigue. I carried on with Adcal-D3 and took a variety of minerals: potassium, magnesium, boron, vitamin K2, and also nuts, seeds and prunes, soya milk. think I have always had a healthy diet with fruit and vegetables every day. And also do brisk walking 3 times a week. When I had repeat scan in 2017 it showed slight improvement: -2.8 spine; -2.5 femoral neck and -2.8 left hip. I thought I was on the right track until repeat DEXA this year showed: -3.3 spine; -2.6 femoral neck, -2.9 left hip. Hip and femoral neck are same as in 2015 but spine is slightly worse, and I was shocked to learn that I have a T9 superior endplate fracture. I do not have back pain.

I am now being referred to an osteoporosis specialist for further discussion as I am so undecided what to do. My GP has mentioned the six monthly injections, or even zoledronic acid. I keep dithering and changing my mind as to the best course of action for me. I am 75 years of age and a full-time carer for my husband who has Parkinson’s.

Is there anyone who is on either of these medications without a host of side effects?

16 Replies

Hello, After trying AA and Risedronate without success, I started Zoledronate. I've had two annual infusions with no problems. Although I did have a few days of bone pain after the 2nd one, but Ibuprofen gel helped with that. I'm waiting for my 3rd one, but haven't heard anything yet. I find the yearly infusions better for me, as they only take about an hour and I don't have to think about it for a year.

in reply to

Thank you so much for your reply. Your comments have certainly helped me . I have read so much about the various treatments and have spoken to ROS nurse (I am a member) but have still been veering between no treatment and treatment. So it is good to hear from someone who is having the infusions and being positive. I am so pleased to have found Healthunlocked.

Kathleen22 profile image
Kathleen22

It is not the side effects so much as the issues with the medicines themselves. The prolia which is the injection one is not able to be stopped and if you do as people have discovered they have broken bones. They all have a half life meaning they keep working after you stop. I worry that the cure is worse than the medicine. My t scores are worse than yours. I have not broken any bones except for a toe or two. Was your break one due to your osteoporosis or one that could happen to anyone?

Also, if you are small like I am you most likely never reached the 30 year old optimum bone density anyway.

Another thing now being reported is whether the machines are reliable and one to the next is certainly not. On the same machine it is questionable let alone different machines.

in reply to Kathleen22

Hi, thank you for replying. My broken hip was due to osteoporosis. I tripped and fell. I don’t think I am particularly small; I am 5’ 3.5” and weigh 9 stone 3lb. I’ve always worn size 12-14 clothes so think I’m pretty average build really.

The more I read, and hear, about Prolia has decided me not to go with this but after hearing more positive comments about zoledronic acid I feel I will go this route. The fact that I have a fracture in my spine, which I was completely unaware of, has made me realise I need to do something.

HeronNS profile image
HeronNS in reply to Kathleen22

I think the annual one is actually a bisphosphonate. Prolia is taken every six months. Not that it makes it (zoledronic acid) any less questionable as a treatment but at least it can be stopped, unlike denosumab, without a strong likelihood of serious rebound osteoporosis

If you don't have back pain and were surprised at the bad test numbers, I would NOT go on any of the drugs. I was on Prolia and developed a side effect - Osteonecrosis of the jaw bone after a cracked tooth was extracted. I am now suffering a rebound effect from stopping Prolia - rebound meaning my bones are worse now than before I started. They want me to start taking Forteo (daily injections for 2 years) I sounds perfect until the see that it could cause bone cancer. I am now refusing to take it. Seems for every plus there is a minus. You have a full plate right now. If you are able to care for your husband without pain, don't mess with it. Some of the side effects of these drugs are depression and fatigue - being a caregiver comes close to edge on both of those things already. Don't let drugs chance you needing a caregiver also. As your husband's needs increase, if funds allow, try hiring a helper for the physically demanding activities and protect your back, and if back pain becomes issue, revisit your options then. Good luck. My dad had Parkinson's - I know the trail.

in reply to angryandfrustrated

Hi, thank you for your reply. I am so sorry to hear of the awful side effects you have had after being on Prolia. Thank you too for recognising the pressures of caring for someone with Parkinson’s. I have had to has several gynae ops in the last few years and have needed to use paid help on those occasions. And it will more than likely be necessary to have more help in the near future. In the meantime I am still trying to get my head around the options but am positive I would not accept going on Prolia now. I am scared of having another fracture. My recent scan also showed 8% decrease in bone density in lumbar region. Thank you for your good wishes.

Collywobbles64 profile image
Collywobbles64

I like yourself am taking boron, magnesium, potassium, vitamin K2 and vitamin D3 plus a healthy diet. The only thing I don't take is calcium supplements as I believe I get enough from my diet. The problem with calcium supplementation is that you need more magnesium as it creates a deficiency. Your T scores in the spine are similar to mine but I have not had any fractures. After my last Dexa (scores had worsened) I decided to supplement with magnesium as well as increase my vitamin K2 and add boron. It will be another 5 years before I will know if it has worked (next scan). I do not take any OP medication as my rheumatologist decided I was a low risk for fractures. Wishing you all the best.

in reply to Collywobbles64

Thank you for replying. I am still awaiting an appointment to see a rheumatologist. I am surprised you have to wait for 5 years for your next scan, I have one every 2 years. The calcium and Vitamin D was prescribed by my GP after I broke my hip 4 years ago and DEXA scan showed osteoporosis. I have been taking it since then. I will wait until I have spoken to the rheumatologist and hopefully I will be able to make a decision then as to what I am going to do. Thank you for good wishes and wish you all the best too,

Collywobbles64 profile image
Collywobbles64 in reply to

I initially had them at 3 yearly intervals but then it was changed to 5 years. The only reason I got one this year was because the pain management consultant was scared after my back cracked when he was examining me. I then got referred to a Rheumatologist and had x-rays to check for fractures. |Thankfully I did not or have ever had a fracture, so with the positive blood results the Rheumatologist decided I was at low risk or fractures and did not need OP medication so signed me off. My doctors practice only refer for DEXA every 5 years.

linlin01 profile image
linlin01

I felt very ill with pains and fatigue on the alendronic acid tablets so I came off them and it took me several months to get back to where I was mobility wise. . So far I have resisted the offer of an injection of zoledronate as it is still the same class of substance as the alendronic acid ie a biphosphonate. I daren't risk feeling as bad as I did last winter with the alendronic acid. Am not due a scan for another 2 years though - hope I dont regret my decision....

in reply to linlin01

Hi, thank you for your reply. I’m sorry to hear you were so unwell after taking alendronic acid. I had aches, pains and fatigue and decided to stop taking it. I have tried to help myself with supplements etc but after finding out I had a fracture in T9 that I was unaware of has made me think I should try OP meds again. I realise zolendronate is a biphosphonate but am trying to decide which is the lesser of 2 evils. The whole thing is a minefield. Good luck.

Nanaedake profile image
Nanaedake

It's very hard to make these decisions as the potential side effects of these medicines can be very unpleasant. After a year I've stopped taking Risedronate due to very unpleasant side effects. Lots of muscular pain and could not sit comfortably for any length of time. Very restless, so difficult to function at work. Unquenchable thirst and numb, painful mouth and tongue.

I don't know what the answer is but the medicine is worse than the disease for me at the moment. It's supposed to be preventative to take these drugs but they don't always prevent deterioration so on balance are the benefits greater than the risks? For me, at the moment I want quality of life to enjoy all I can. I do lots of exercise and enjoy it. I take all the recommended vitamins. I expect to see so.me deterioration as inevitable with age. I might feel differently in a couple of years.

in reply to Nanaedake

Thank you for your reply. I understand what you mean about quality of life. I just feel that despite best efforts with vitamins, minerals, a food diet and exercise that my osteoporosis has deteriorated slightly. It feels as though you are caught between a rock and a hard place. I am finding it difficult to know what to do for the best (apart from not wishing to go on Prolia). Thank you again. Wishing you all the best.

Nanaedake profile image
Nanaedake in reply to

You have to be careful with potassium supplement as it can interfere with calcium absorption if you are not deficient.

Keep taking the K2-MK7. Best form is MK7 from natto. You could also try kefir made from organic grass fed cattle milk. If you make your own it's inexpensive.

Did you ask how old your spinal fracture is? It could be due to an old injury before you got osteoporosis. Also compare bone density of other people your age to help make a decision.

It's actually quite common for people over age 70 to have some osteoporosis.

As youve had a hip fracture, you really want to prevent deterioration but you need all the facts to help make a decision.

You could find out what percentage of improvement you could expect from whatever treatment is suggested and ask how the improvement will be monitored.

in reply to Nanaedake

Dear Nanaedake,

Sorry, I thought I had replied to you to thank you for your kind suggestions. I did stop the potassium supplement and changed the K2 brand I was taking to K2 -MK7 Natto.

I have recently had a rheumatology appointment following referral and after much thought and discussion I have decided to go ahead with the zolendronic acid infusion. I am must waiting now for a date which should be in the next couple of weeks.

Thanks again.

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