I really need some help because I feel like I am not getting the best advice from my doc. I’m mid 50s, female, post menopause. A year ago I spontaneously broke 2 ribs, followed by a compression fracture in my spine. Mayo primary doc put me on Fosamax. After 2 months, pain in upper leg was increasing and felt it was spreading across groin. Also felt dizzy, constipation, difficulty swallowing, etc. I stopped taking it. Pain ceased in a couple weeks and eventually my throat returned to normal. I increased exercise, stayed on calcium/vitamin D supplements and did not want to take Prolia. Felt it would be just as bad as Fosamax. Now a year later, my rheumatologist has convinced me that I should be on Prolia to prevent my next fracture such as a hip. My life has changed. I was an extremely active hiker and golfer. I can do a little “gentle” hiking but I can no longer golf. Very afraid that if I fall I will break something. The rheumatologist has said he has many patients on Prolia with no side effects and this would benefit me. He is somewhat dismissive when I mention anything I’ve read such as reversing any gains to bone density when you stop or side effects. I’ve read some information recently that you have to take another bone density drug if and when you stop prolia. He never mentioned that and that troubles me. I am feeling lost between what I’m researching and what I’m being advised by my doctors. Any advice from those who have had similar experiences would be helpful.
Would you need to be on a bone density med the rest of your life and, if not, would you just go back to square one? Has anyone successfully increased their bone density through calcium/vitamin D supplements and exercise alone? Has anyone been on Fosamax and had to switch to Prolia and was it better?
Thank you for your help!
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AZsunrise
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Welcome to the Forum. Your predicament regarding a treatment plan is shared by many of us. I have no personal experience of Prolia, only like you what I’ve read. On the other hand I don’t think Ca and D3 alone are helpful. See the following
‘
Vitamin K2 and the Ca Paradox’ by Kate Rheaume Bleue, shows the importance of D3, Mg, vitamin K2 and A retinol, which all work together, to help the Ca reach the bones and to help stop it being deposited in the arteries. Beware that too much Ca is potentially hazardous and is best obtained from diet. The RDA is 1000 to 1200mg.
Thanks for your reply. My post was already long, but to add to it my exercise regimen has been switched to entirely weight bearing for this reason. My supplements consist of Calcium 600 mg/Vitamin D3 400 mg 2x/day, K2, magnesium and various B vitamins (not related to Osteoporosis). Diet has been consistently 40% carb, 30% protein, 30% fat with organic, whole foods being the source. It wasn’t always that way with my diet, however. For almost 15 years I have been gluten free due to celiac and my diet was poor and unbalanced. Protein, with too little calcium rich foods and grains, is not a good mis for bone health either.
At present, there have been no other OP treatment options for me that have been offered. Prolia is the “go to” drug and I’m very hesitant to go down that road.
Do you mean you are taking a TOTAL of 600mg of Ca / 400IU of D3 Supplement, each day ie half in the morning and the rest in the evening,
or are you taking a dose of 600mg Ca / D3 400 IU twice a day?
The reason I ask is 1200mg of supplementary Ca seems a lot, unless you cannot get Ca in your diet.
It’s better to get most of this 1200 mg from your diet if possible.
Have you had a recent vit D test done? If your D level is on the low side, the dose you are taking is unlikely to be sufficient to reach a reasonable level.
To correct a deficiency 2000 to 5000 IU of D3 is often required.
I'm taking a total of 1200 mg of Calcium per day with the added D3 800 IU per day. It is the dosage recommended by my doctors and recommended levels for post menopausal women. When I was on Fosamax, I decreased this by half. Vitamin D levels are good.
GPS are notoriously poor at nutrition, they have so little training. Optimum d3 levels are 2000. I am currently taking 10,000 iu’s a day. There lots of good info on the Facebook Vitamin D deficiency group U.K. - open discussion. You need co factors as well as the vitamin d. Good luck, hope this helps.
Because you've had what are almost certainly what they call "fragility" fractures it seems you really should be on something. I think you should avoid Prolia. If you start you are pretty much stuck with taking it for the rest of your life. It's disappointing your doctor doesn't seem to be aware of the major risks associated with discontinuing Prolia once started. Denosumab may also have a bad effect on the immune system.
There are bisphosphonates which are given intravenously so you could ask about something like that. I believe there are patients on this forum who could not tolerate the oral form but have been fine with the other way.
Whatever you take, it's best to stop after two or maximum three years (except Prolia, aka denosumab) in order to avoid the risk of spontaneous fractures caused by brittle bones which occur as new bone is laid over an increasingly aging matrix (bisphosphonates and Prolia prevent old bone from being removed).
And whatever you decide regarding medication, do something like this as well:
Thanks for your reply. I’ve also read your previous post. I’m doing many of those things. I’ve lost confidence in my GP at Mayo Clinic and switched to another one and sought a second opinion by an endocrinologist. They all thought Fosamax was best until it didn’t work and I had horrible side effects. Then, it was on to Prolia but I resisted that. Then, since I already see a rheumatologist, I consulted with him on my osteoporosis. He has suggested Prolia also and my infusion is scheduled. He said I can safely be on it for 5 years and never mentioned any difficulty going off of it even when I brought up concerns. He has many patients on this successfully. They are probably not 55 years old though and my age definitely concerns me also.
Maybe I'm repeating myself, but have you been properly tested to make sure there isn't a treatable cause for your bone thinning, like parathyroid issues?
I became ill with ME/CFS many years ago and have had a lot of pain and health issuses. I have had such awfull experiences with different pills doctors gave me, so I decided I’d try to find more natural solutions. Therefore I do not want to take any prescripted medicin - yet - for my osteoporosis diagnosed half a year ago. There are so many things doctors/experts still don’t know about this condition. I have recently successfully managed to improve my kidney problem and with that in mind, I sure will do what I can to stop/reverse this as well. I also take acupuncture, reflexology, do yoga and walk a lot. In addition to those advice given above about vitamins (I do not take extra calsium - just through food) and minerals, I take a good Omega 3 supplement and my blod testes show good results (anti inflammatory markers). I also mainly eat traditional food (WASPish). In addition I will try CBD-oil. Very interesting that scientist as late as in the -90’s found the endocannabinoid system called «the most important physiologic system involved in establishing and maintaining human heath»
Thanks Cocosa - will follow that site. My GFR has been stable for years but would like to improve!
I have OP and have always engaged in weight bearing exercises 5-6/week. I also ate a healthy diet and took all the supplements recommended in this post and by my Dr. None of that had a positive impact on my OS b The absolute worst thing you can do it after Medical is life on the farm although everyone means well, they are not your doctor. You do not trust the doctor you were having now, will you get a second opinion . Everyone has different thoughts and feelings regarding the iOS medications, but honestly, they are the only things that will actually a person with OS after the natural approach fails.
My rheumatologist would actually be my 3rd opinion. ☹️ My first was my GP who wanted me immediately on Fosamax. I requested to be seen by an endocrinologist and she seconded that suggestion although I had wanted to try the supplement/exercise/diet approach. Above all else, I needed to know WHY this was happening and nobody can tell me that. My bone density scans were borderline osteoporosis, but the fractures were the concern. After the Fosamax issues, they suggested Prolia and I have been dragging my feet. I already take a couple other meds that I’ll be on indefinitely and I hate to add more. I don’t like taking any meds. So, I sought the advice from my rheumatologist and he thinks Prolia is the best for me. In my experience, doctors tend to not think side effects won’t bother most people and this doctor was a bit dismissive when I asked about them. Also never mentioned if it was a lifetime commitment and if I would need to switch to another med when I need to discontinue. So . . .that’s how I dropped into this forum. Lost and confused 😐
If you read the link I sent you above, you'll find a reading list. I don't know if all the web links still work, but there is one, I'll give it here for convenience, which describes a study showing that supplements and exercise do work to improve bone density. A lot of doctors appear to have been taught that osteoporosis is irreversible and requires medication but this is simply not true.
Thanks for this article. 😊. Very informative and I hadn’t seen this before. The information on strontium citrate was very detailed. I have read such conflicting information as to whether include this in your supplements as it can give false readings on BMD scans and has its own heart related risks. I am also now monitoring my calcium intake in foods to try to make that more consistent to stop taking the calcium supplement. Thanks again
I have had horrid side effects with Prolia. I first had a month of Forteo daily injections and had some nasty side effects, but switching to Prolia caused bone and muscle pain in my arms and legs, hair loss, skin rash, muscle spasms, and more. And I only had one injection, refused the 2nd one.
In the various osteo-related groups out there on FB there are many of us who have had awful experiences after Prolia. It's been a year since my first and only injection, and I am still suffering bad lower back pain, increased neuropathy in feet and lower legs, and throbbing pain down thighs when lying on them at night. You spoke of Mayo Clinic. Go on their site and look for side-effects for Prolia. I recall 3 pages of them, and I think I had between 1/3 and 1/2 of those. Yes, some of us don't have any side-effects, but many of us are affected. And yes, many doctors say it's unusual to get them. It's not!
Sorry to hear you’re still having pain. I have read the Mayo site. I always turn to the Mayo Clinic and Web md sites first when trying to get info. I may be getting more information than some of my doctors. 😂 (Joking). It just might be that I have more time or more interest to do this in depth research. Hope you feel relief soon.
I CURSE AMGEN AND MY 'RHEUMATOLOGIST' FOR PUTTING ME ON PROLIA - I TOOK 3 SHOTS AND THE LAST ONE HAS AGED ME AND MADE WEEKS OF MY LIFE MISERABLE - WHY ISN'T ANYONE INVESTIGATING THIS...??
I'm sorry to hear and agree after hearing so many bad symptoms and results. Hoping it gets investigated. I don't know why doctors aren't listening to patients!
I too was put on prolia and had the same side effects that you had on fossamax. Leg and hip pain, arm and neck pain, stomach pain. This all happened after my second prolia shot, no side effects after the first. But I have decided NOT to take the third shot. Was never told that I then would have to go on other medicine. Doctor not happy with my decision but am beginning to recover from side effects. Don't know if they will completely go away, but would rather go the road of exercise and vitamins
I was on Fosamax and ended up not being able to swallow, so I stopped it...please don't let the doctors talk you into Prolia! It's one of the worst and I believe all bone meds. should be taken off the market as they are dangerous!
Thanks for your reply. I really feel I can manage without the meds and hope I will be successful. I have a very balanced gluten free diet over the past year, but for many years my gluten free diet was nutritionally lacking. (Celiac). This along with the supplements and exercise will hopefully reverse or stabilize my osteoporosis.
My GP was happy for me to not have prolia shot 2 and will review in 2 years time. Hopefully can get -2.6 reading back to osteopenia with supplements and weights program!
I have friends who have taken osteoporosis drugs for years without side effects. I’m the only one not happy with experience!
The meds work for many people but for some there are very serious side effects. It seems to be a gamble and we may hear more about the negatives than positives on these medical forums. But, that is enough for me. I don’t think I’m ready to try this especially since I’m borderline osteoporosis (but at a higher risk due to fractures). I hope you see improvement on your next scan — me too 😊
Re your rib fractures - a previous GP told me doesn’t take much to fracture a rib as simple as a cough! A friend recently bumped hers with a bar at the gym and it fractured. She doesn’t have osteoporosis! Being borderline like me I feel confident about the exercise and supplements. I did it seriously 20 years ago when bone density first borderline and had dramatic improvement with subsequent scans. However, got a bit lax last few years and bone density slipped back.
I will take a look at the book. Sounds interesting. I do take magnesium but only 100 mg per day now. For years I took 400 mg at the advice of my neurologist but it caused digestive issues. Thanks for the advice.
Hi as it is late I recommendthat you ask your rheumatologist to prescribe Forteo which is a nightly injection for 2 years to build up boe after two fractures. Stay off Prolia and Forteo is a synthetic Para Thyroid Hormone whichbuilds up bone. Noside effects and I am on it 9 mths and I can move around after two fractures on my spine when I came off Prolia as the consequences of all my bonebuild up being reasorbed when I cameoff Prolia.
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Bone Density Scan
Has anyone had sacral ala (pelvic) insufficiency fracture while on Prolia and/or a bisphosphonate? 
