Hi. Currently living in the Netherlands but originally from UK (moved here 4.5 yrs ago). Had results from my 3 yearly DEXA. Spine worsened a bit (-3.3 to -3.6), hip improved (-2.2 to -2.1). I usually run a lot & take Calcium & vit d but a (still healing) metatarsal stress fracture & this result has made me realise it's time to talk treatment. I'm 46.
I don't want to take Prolia - everything about it puts me off. My preference is Forsteo (if my specialist will prescribe it - health care system is not public like NHS so options are often available), or Evista/raloxifene. I have a stressful/busy job and busy leisure time so I want to minimise impact I might suffer and carry on running as I do (and which is recommended by my bone specialist and every single GP I talk to).
Hearing people's experiences would help a lot. I've read nearly everything there is to read on each option, spoken to a specialist nurse etc but those terrifying patient reviews after Googling, stay in my mind. Advice???
Thank you!
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Sheeniejay
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Have you tried a weighted vest? It may well help to increase spine density. My Personal Trainer said to mix up the running. Do star jumps and jumps on the spot and not just jogging. I agree, according to this blog, Prolia sounds scary. I am just taking Alendronic Acid. Sounded okay to me and my NHS Dr advised too.
Hi, Sheeniejay - My experience was with Fosamax tablets. I took 3 (one a day) and on the third day, went to lunch with a friend. Ended up not being able to swallow and almost choked to death. Doctor took me off it immediately...and I will NEVER try any of these bone meds again. I've read the horror stories, too, and believe these women/men more than the doctors, who seem to think it's OK to prescribe these horrible meds. I'm on HRT (Hormone replacement therapy) & I'm hoping that will help. Otherwise, I'll just take my chances, because I don't want to end up a cripple via the bone meds. Be careful! You're only 46 (I'm 70)..maybe try the HRT...
Thank you! Yes, I agree. It's because you helped me yesterday, telling me about HRT, that I'm going to ask my specialist if I can go on HRT as a first course of action. If you hadn't said that, I probably would not have known. I just hope that this is a possible option in Netherlands. I know the meds are covered by health insurance so that's not the issue - I just don't know if you have to prove no other option has been tried. Saying that, she was willing to put me on Prolia instead of biphosphonates and told me to look into it - NO WAY am I taking Prolia now I've read experiences and the scientific risks about atypical/rebound fractures! I'm a patient, 46 yrs old, with OP who is asking for treatment and therefore I think less aggressive, and an alternative route needs to be discussed. Really, your advice is an utter treasure - thank you!
Thank you! If I were you I might "embellish" my symptoms to sway the doctor to your point of view regarding the HRT...ie: "I'm having terrible hot flashes/night sweats...can't sleep....moody...would like to try them to see if they may help..and by-the-way, I've heard they can help with bone, too, and I feel more comfortable taking the HRT than any of those bone meds." Anyway..whatever works for you!!
Thanks. Well, due to low body fat, I stopped periods about 20 years ago - which is why I am in this position now. I know many years ago, a UK GP offered HRT but I refused - I think it was probably due to the scares about it and other reasons. My specialist is double checking there's no other reason for stopping periods - though a gynae did tests a year or so ago and all was fine. The sports doc and bone specialist call it athletic amenorrhoea. Just looked up treatment for that:
starting the combined oral contraceptive pill or hormone therapy if dietary changes and reduced exercise do not result in regular menstruation returning
and taking calcium supplements to increase bone strength and prevent osteoporosis - SO, second thing I'm doing, I think then I will add this factor into it. I'll keep you posted!! Feel free to message me any time if you ever need to mentally download!
Keep your fingers crossed for me that Dutch specialist will support HRT. Really nervous about Monday's appointment though I know the doctor DID read a MASSIVE lot of information and a letter I'd written to her, outlining what course of treatment I wanted etc I mean, it was a lot to go through so I hope that is a good sign.
I did feel dizzy, that has now passed. No side effects now, long may it last. I have been on the drug for two months. I am planning to continue for two years then ask for a repeat Dexa scan. I am very careful how I take it, on empty stomach and keep upright for a few hours after taking the medicine.
I wish I could do star jumps and jumps on the spot. With two total knee replacements in 2008 and 2010 and one revision knee replacement done in 2016 and a dodgy spine this is a no no for me. I have tried but it jars my spine far too much. I walk lots and also jog a bit around the house. This does not aggravate my spine.
Hi yes I've been on alendronic acid since April first few doses I had pain in fingers could hardly lift up a cup but I already have lumps on every finger arthritis unfortunately, spoke osteoporosis nurses they urged me to continue a few more weeks as side effects usually wear off luckily that was the case OK now, had a follow up appointment by phone 2 mins if that blah blah carry on for five years have another dexa etc, NO I will take for max 3yrs ask for dexa see where we are then even if I have to pay for the scan, as I believe the tablet stays in your system for quite sometime unlike the injection, I'm afraid that's the only help I can give you all the best and your correct most GPs here won't prescribe HRT over 60yrs.
That's not true anymore, lolly64. I'm 70 and my doctor prescribed HRT for me because of my bones and other horrid symptoms I've had with menopause through the years and years and years.
I've been taking raloxifene for 20 years. I also lift weights and take calcium and vitamin D. I haven't had any side effects that I know of, although I usually feel warmer than people around me, which might be a result of the raloxifene. My bone density decreased minimally over that time. I did break my arm last year, but I still don't have osteoporosis, according to the DEXA I had a few months after the break (spine was -1.4 and hip was -1.8).
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