Is Prolia worth the risk.

[MissKitty777]

I’m 74 and have never had a broken bone. I was diagnosed as being high risk for fracture. Because I have reflux issues and take Pepcid, my doctor wants to put me on Prolia. I’m concerned about all the side effects and wonder if it is worth the risk. I’m new to these kinds of boards. My doctor never gave me my score. Should I ask for it?

[Fruitandnutcase]

I’d say that before you even consider Prolia you need to know your DEXA scores. Do you actually even have osteoporosis and if so how badly. Have you had any blood tests to check for things like vitamin D, low calcium, hypoparathyroidism - no amount of osteoporosis meds will help unless certain causes are rectified.

I would make sure you see all of your test results and read up a lot about the causes of osteoporosis and the prescribed medicines but be aware if you start on Prolia and have to stop taking it for any reason you absolutely must go onto a relay drug such as a bisphosphonate as soon as you stop or miss a dose - you can’t even be late in taking it - to avoid rebound fractures.

So get a copy of all your results and then read up as much as you can before you commit to anything.

The U.K. site for osteoporosis is the theros.org.uk/ it is packed with useful information about osteoporosis but there must be a similar society in the USA.

[Karana81 in reply to Fruitandnutcase]

I have had osteoporosis for years. My DEXA numbers were much worse a couple of years ago. I had been very lax about calcium, D and exercise. I had a mild vertebral fracture and knew I had to do something different. I stepped up my vitamin and exercise regime and my next DEXA was stable, so that piece was important, but my doctor highly recommended a few different med options. I found them all scary, but finally chose to do a Reclast infusion last March. I had no side-effects at all and just hope my numbers remain stable when I have my next DEXA in March of 2023. From all my research, if you have to do one of these drugs, Reclast seemed effective with the fewest negative side-effects. Good luck!

[MissKitty777 in reply to Fruitandnutcase]

Thanks for this information. I do have hypothyroidism and take levothyroxine for it. My vitamin d level was 50 but I’m having a new blood test in November. You’ve given me something to think about.

[Mark_ABH in reply to Fruitandnutcase]

American Bone Health, the organization that runs this forum: americanbonehealth.org/

[lilo789]

According to former ISCD president, Dr. Neil Binkley the major DXA error rate is 50%. Getting a copy of the full scan with images is worthwhile for future reference.

In some countries one's overall fracture risk is considered. Are you aware of your overall fracture risk?

[dcdream in reply to lilo789]

Wow....can you share the source of this finding. that's really high for an error rate. What an eye opener that is. I'd love to read that article.

[MissKitty777 in reply to dcdream]

I would be interested in that too.

[lilo789 in reply to MissKitty777]

"The problem is that as you probably know, not all bone densities are done properly. In fact the ISCD says up to 90% of bone densities have errors and you have probably seen quite a few of these...." 13.32 mark

vimeo.com/730115886?fbclid=...

[lilo789 in reply to dcdream]

Dr. Bill Leslie's study found a 90% error rate - these are not major errors, however. One of the authors Dr. Sarah Morgan has said she sees a major DXA error rate of 75% at her clinic while Dr. Binkley refers to a 50% major error rate.

journals.sagepub.com/doi/ab...

[Meme50 in reply to lilo789]

very interesting!

[Viazoy]

I wish I had never started on Prolia. After a few years on Prolia the doctors - endocrinologist bone experts at major medical centers - said I had been on it long enough and had to take a "drug vacation." Shortly thereafter 3 vertebrae broke and I have been in terrible pain ever since.

[MissKitty777 in reply to Viazoy]

I am becoming less inclined to use Prolia. I had not heard of recast. I’m going to look into that

[Mark_ABH in reply to Viazoy]

That is borderline malpractice. Prolia's instructions for use specify that patients should not stop taking it without starting another medicine (usually a bisphosphonate) to prevent a rapid decline in bone density and increase in fracture risk.

[Arie4 in reply to Viazoy]

your doc didn’t transition you off PROLIA? Just stopped abruptly?? I’m sorry if that is the case, as our bones can drastically lose ground when doing it that way. Best of luck recovering.

[Greytree]

my doc has recommended Reclast by IV once a year. Anyone have experience with that?

[Maieva in reply to Greytree]

I went to the Mayo Clinic in Arizona and saw an endocrinologist. She ordered a Bone test as well as tons of other blood work and urine tests to see if there was any other reasons for my low scores. She recommended Tymlos, but my insurance would not cover it until I took another bone drug for a year. Her second choice was Reclast. I had the infusion on August 22, 2022. I was told there was a 50/50 chance for flu like symptoms. I was really sick for 3 days. I feel fine now and so far have had no other side effects. I’m hoping it works. I’ve heard good things about the results. For the record, I am 64.

[Greytree in reply to Maieva]

thanks. I’ve been hesitant to take it. All good to know.

[Gaeilge]

Once a month I go to the general surgeon to have some of my numerous lipomas. He cuts above them and removes most of them. They are round-ish jelly-like lumps that hurt and are unsightly as they lurk below the skin. I wish that I had been able to join the class action suit against this pernicious drug.

[M3745 in reply to Gaeilge]

Which drug are you referring to that gave you the lipomas, Prolia?

[MissKitty777 in reply to Gaeilge]

yes, we’re you talking about Prolia

[yogalibrarian]

I think when you are calculating the risk equation, you need to look at all of the "side effects" on both sides of the equation.

In general, the benefits of any of the osteoporosis medications greatly outweigh the risks.

But what are the potential "side effects" of a fracture? Possibly long-term disability or death. We hear most about disability and death from hip fractures, but vertebral factures can also create irreversible health problems that can lead to death.

I suggest figuring out your fracture risk using one of the available fracture risk calculators -- FRAX or American Bone Health's FRC. Then have another conversation with your healthcare provider.

Good luck with your conversation and your treatment.

[MissKitty777 in reply to yogalibrarian]

thank you. Today at church I talk with 4 women three were on Prolia and had been for years and none had any trouble at all with it. All three said their reason for taking it was they didn’t want to fracture the spine. One had broken her hip in a fall but she said she revived quickly. The fourth woman was a nurse who said if she needed it, she would do Prolia for the same reasons you said. I really felt better after meeting women who had used it and were doing well. Thanks for taking the time to write.

[yogalibrarian in reply to MissKitty777]

I'm glad you found some people to support you. It's easy to get caught up in sensational headlines and miss the facts.

One of my favorite fables is Henny Penny/Chicken Little. Everyone was so caught up with the idea that the sky was falling that they failed to notice the real danger -- Foxy Loxy -- who ate. them.

[Bjql]

I would say ask for your score, I didn't at first and took a shot of Prolia and my side effects from it hasnot been good. I don't plan on taking anymore. I will take bone supplements and eat prunes and exercise and good diet. My t score were not as bad as he made it sound.

[MissKitty777 in reply to Bjql]

my t score for my spine was -3.3 which seems bad. My hip and neck were not that bad. If my spine score had been the same as hip, I would not do anything.

[Frida22]

Hi - Your experience is similar to mine. I'm 71, my latest spine Tscore is -3.3. My doctor also recommended Prolia when I said I was reluctant to take bisphosphonates because of a sensitive stomach. Others on this list have spoken about the dangers of Prolia... accelerated bone loss and spinal fracture if/when you go off it. So, doctors prescribe something like an oral bisphosophonates to continue with if/when you go off Prolia. So you are back to the same stomach / gastro-intestinal problems! I am not impressed with this thinking. Before you do anything - I highly recommend reading: The Whole Body Approach to Osteoporosis, by R. Keith McCormick; there is a great section on gastro-intestinal health, chronic inflammation and bone loss. (Many thanks to someone on this list who recommended it). I am reviewing my diet, supplements, exercises... in an effort to improve my gut health and overall strength - in a renewed effort to not go on meds. I am also strongly considering taking strontium citrate. I have my next bone scan a year from now and will reassess then. Good luck, Nancy