Are you a member of the Royal Osteoporosis Soc... - Bone Health

Bone Health

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Are you a member of the Royal Osteoporosis Society?

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13 Replies

I do have osteoporosis and curvature of the spine. I am on annual Zolendronic Acid infusions and daily calcium tablets, Calceos,

Lilyrosemarie profile image
Lilyrosemarie in reply to 2003UK

Hi, I have osteoporosis and curvature of the spine too. Zolendronic infusion has been recommended for me. Would be interested to know how you have got on with it. Thanks

2003UK profile image
2003UK in reply to Lilyrosemarie

I believe the guidance is for it to be used for up to 5 yrs. I have been on it 7 or 8 yrs, with no side effects. Between 2011 and 2013 I lost 5 in in height. I have also fractured and compressed 7 or 8 lower vertebrae, mostly 2011-2014.I did fracture one, my own fault really, about 6 yrs ago, but none since.

I try and walk 5 mls a day and I am a pilates girl. I hope this gives you some context.

Pte82 profile image
Pte82 in reply to 2003UK

2003UK, It's a big word but geranylgeraniol offers big benefits for those taking Zoledronic Acid or Alendronic acid . Please research it further in addition to the link below. Vitamin D needs magnesium to become bioactive and to also balance calcium. Boron is an important element for your joints, bones and may play a role to stabilize your spinal curvature. Search on "nothing boring about boron" for an introduction. Dr. Jorge Flechas MD has a youtube program about boron and tells how it has kept him from losing height but goes on about this fascinating fifth element. Delta tocotrienol from annatto is a form of vitamin E that offers bone and joint advantages worth checking out. Be aware, tocopherol supplements (regular vitamin E), can diminish tocotrienol and should be taken several hours apart. Always consult your health care professional before using any supplement.

The ROS Nurses have been amazing and are so understanding. Unfortunately the same can't be said for the medical profession here as I have thinning of the Pelvic bones and 2 fractured vertebrae which are causing me agony despite the morphine that is thrown at me! I gave the ROS information about Osteoporosis medication to my Dr. because I also have quite severe stomach problems and he won't give me any of the medication. He still won't and I have not been referred to a Specialist so I feel lost and in so much pain.

Staplehurst profile image
Staplehurst in reply to Danni54

Are you sure that it's not the Alendronic acid tablets that potentially could be causing your stomach issues. I decided against AA and put on Risedronate 35mg once a week instead. Plus the AdCal - D3 daily. Wondering how often we should request a Dexa scan so how our bone health is doing.

Danni54 profile image
Danni54 in reply to Staplehurst

Hi. I haven't been given any medication because I have a large hernia and Diverticulitis but ROS have told me that I can have injections or a drip which wouldn't cause any problems. My Dr. still hasn't given me anything. The fracture pain is horrendous. I had a lung cancer misdiagnosis and they didn't bother to do anything for 15 month's so I've been left with multiple problems. Am trying hard not to let it get to me but it's difficult! I have requested a DEXA Scan and have to wait 8 month's before I get one. If you haven't had one for a while I think it would be good for you to request one now just in case there is also a waiting list where you are. Take care. Danni

Staplehurst profile image
Staplehurst in reply to Danni54

Thanks, my rheumatologist sent me to the one I had approx a year ago. I'd be more than happy to pay for the next one, only £112.

Suffering due to longterm use of high doses of Prednisolone. Would like to find out more about the condition as I've been on every medication available.

ROSAdmin2 profile image
ROSAdmin2Partner in reply to Jeanfkelly

Hi Jeanfkelly, we have some information about steroids and bones. On our website. glucocorticoids-steroids-and-osteoporosis-fact-sheet-august-2017.pdf

Jeanfkelly profile image
Jeanfkelly in reply to ROSAdmin2

Thank you Rosa. I'll certainly look at that.

Just spoke to the Nurse about problems I’m having. You are all brilliant and helpful.

It is interesting to see how many are ROS paid up members and how many are not. ;)