A dilemma - whether to continue denosumab
Posted , 4 users are following.
I've been taking Prolia (denosumab) for three years with no side effects until my last injection which resulted in horrendous thigh cramps eight hours after the injection. Before my next six monthly injection my doctor suggested I bought forward my dexa scan.
My results are encouraging: BMD in the spine has increased 12.7% since previous scan in 2013 (T score now -4.1) BMD in the hip has increased 5.7% (T score now -1.9). Left femoral neck 0.475 g/cm2 (forget to check how his relates to T score).
The dilemma I have is: Do I stick with denosumab, despite a very painful (albeit relatively short lived) reaction, knowing that it improves my bone density? , do I look at alternative treatments?? or do I risk going down the no drugs, natural course, not knowing if my bone density will continue to improve?
I visit the gym two or three times a week, strength and weight bearing exercises, walk a lot and go to weekly yoga classes.
I take calcium with boron and magnesium, vitamin K2 and vitamin D3
I'm in my mid seventies, have a family history of osteoporosis, cannot take bisphosphonates and despite having an increased BMD score with strontium ranelate I was taken of this drug for medical reasons.
My doctor, who specialises in osteoporosis is making an appointment for me to see an endocrinologist to discuss the way forward.
In the meantime I would welcome any comments from contributors who have improved their bone score after going down the natural route.
0 likes, 9 replies
Mary_D_23339
Posted
As a P.S. I should add that I recently had a very bad fall (really MUST start to look where I'm going!) , badly sprained ankle/foot but NO broken bones.
Anhaga Mary_D_23339
Posted
Denosumab works by killing off the osteoclasts, the cells which are largely responsible for bone remodelling. So for three years the osteoblasts have been building new bone unimpeded on the old matrix from pre-medication. Your bone density may well be better, but your bone strength is not likely to improve any more from this medication. I suggest you talk to your doctor about a drug holiday, and pursue more natural means of building your bones (which, by the way, I hope you have been doing anyway). Another thing about damaging or destroying osteoclasts - it's now being found that they are an important part of our immune system, so the denosumab is having a more profound effect upon your body than just the skeleton.
All the best - do let us know how you get on. Hope you feel better soon. ?
Mary_D_23339 Anhaga
Posted
Thank you for you comments. I did know that Prolia can prevent the turn over of dead bone cells, but having such a high initial reading (spine -5.2) and a family history (my mother took no osteoporotic drugs - apart from pain killers - and ended up in a wheel chair in constant pain) I felt that at least attempting to increase bone density better than nothing!
?Have you come across any figures indicating percentage increase of bone strength (rather than density) via the drug free route?
I haven't researched the link between osteoclasts and our immune system so looks as if I am going to be busy - lots of reading and going to my specialist's appointment armed with lots of questions.
I'll let you know my decision.
Anhaga Mary_D_23339
Posted
There was a study done on micronutrients and bone density. I'll private message the link. I'll also include a number of other things I've read which might interest you. I was given my femoral neck reading, but when I asked was told I "didn't need" the reading for my spine. Frankly I think I should be the judge of that, but I've operated on the assumption that I only have osteopenia and am attempting to at least keep to that, despite risk factors of prednisone and also possible effects of otherwise non-symptomatic sarcoidosis, which can upset Vitamin D and calcium metabolism.
Juno-Irl-Dub Mary_D_23339
Posted
Hi Mary D, Your quesstion is a hard one to answer. Undoubtedly, your Prolia use has improved your BMD and also reduced your fracture risk (Prolia makers claim a 68% reduction in spinal fractures). I presume you were prescribed it because you have already had a fracture and were unable to tolerate the bisphosphonates. (BPs) Also you were lucky that there were no significant side-effects for you (apart from just recently).
The question now is - what now?? Your next step planned, ie. a consult with an endocrinologist, is the best one. I think Anhaga's advice of suggesting a 'drug holiday' to your specialist when you see him and, with his agreement, take up the exercise/diet/supplements route for a specific period and get another scan to check progress.
If you have repeatedly fractured, and because your bone density is still very low (same as my own) your specialist may not agree with a 'drug holiday'. As you can't take the BFs, have had problems with Strontium, the only other type of meds. is the hormone-type meds. (Forteo?) . . . . . I've JUST finished my 2-year Forteo course, but at last scan one year ago, spinal scores went from -4.5 to -4.0, and now the specialist wants a 5-year Actonel course, no break mentioned because of my low BMD. . . No fractures.
DO let us know what your specialist recommends. Kind thoughts, J
Juno-Irl-Dub
Posted
Mary_D_23339 Juno-Irl-Dub
Posted
Thank you for your encouragement.
I've never had a break (sssh - hope no one is listening), have always led an active life and try to eat healthily too.
I'll give my decision some careful thought and listen to what the specialists advices... and then make my own mind up!!!
Juno-Irl-Dub Mary_D_23339
Posted
Mary D,
ANOTHER typo in my post, (lord what's wrong with me?), -
4th. line from the end, should read " ..... type meds. ( OR Forteo?) . . . Just in case you (or anyone) was wondering whether I was loosing it . . . J
Mary_D_23339 Juno-Irl-Dub
Posted
No worries, I put two and two together and made five! It all became clear. I'll keep you all posted. Thank you everyone for your comments.