Prolia question

[Lisieux]

Hello, My endocrinologist keeps on insisting that I must start with Prolia because my T-score Lumbar spine is -3.5. I would prefer not to get those Prolia infusions because of the side effects. Has anyone had good results? Are there any other options out there other than Prolia? It just seems that we are stuck with these awful medications with all the side effects.... any comments or suggestions will be appreciated. If you've had good results with Prolia please let me know.... at least I'll have some hope that it'll work for me too.

[HeronNS]

Have you had any fractures? If not you can probably consider trying a year or two of natural methods and see if that will work for you. Before commiting to either that or to medication you need to know if you have any "secondary causes of osteoporosis". Have you been tested to eliminate any of those? I know parathyroid issues are mentioned surprisingly often. Presumably if you are under the care of an endocrinologist the appropriate tests will have been run.

To get some idea of what I'm suggesting as an alternative you can read my story. I'm not advising you to follow such a regimen, but I put it forward as an idea that you could adapt to your own needs. I do advise adding this sort of thing even if you do go the medication route.

Prolia is not advisable except as a last resort because of the high risk of rebound osteoporosis if and when you stop taking it.

healthunlocked.com/pmrgcauk...

[Bet117 in reply to HeronNS]

Thanks Heron,

I wouldn't touch it, but your input will help many.

There are many undesirable side effects.

My osteo- endo wanted me to take Romosozumab, for a year; which is incompatible with my family history and Re- Clast for 3 to follow. Interesting no Prolia.

I sought a second opinion with a rheumatologist who pushed the Prolia with the reasoning that it was more fast acting than Re- Clast.

I asked my questions and refused due to the side effects which can occur in addition to fractures. I have low to low normal BP. It can cause low BP, skin rashes, pericardial infection, low calcium- no thanks!

You are terrific!

Bet

[HeronNS in reply to Bet117]

Romo... has been brought to us by the makers of Prolia. Called Evenity. Has a black box warning.

[Bet117 in reply to HeronNS]

I know about the black box warning, but not connection to Prolia. Thanks!

I was not pleased when my osteo-endo began pushing this when 1. the infusion nurses in his metro hospital had not been trained in the administration of this; I would be a guinea pig. 2. He has always been thorough, even ordering labs to stay on top of many areas.

I was not happy that he did not read my personal medical history forget family history when he initially pushed this.

The second year he got a flat " no" and why.

Interesting that he didn't broach the Prolia, I would have rejected it anyway.

Thus, decided a second opinion was in order.

Thanks so much for the. " heads-up". I plan to share that with both my PCP and nephrologist.

Please keep in touch.

Bet

[HeronNS in reply to Bet117]

I'm often on HU, and you can always private message! Good luck!

[Lisieux in reply to HeronNS]

Thank for your response Heron! No I have not had any fracture thank God. I think the secondary cause could be that I've been on Synthroid for a long time, with varied doses from 125 to 50 mcgs. It appears that the parathyroid fx is normal. Unfortunately by knees and my hands are in bad shape. It looks like I have periarticular osteoporosis of the joints on both hands. That's probably why he wants to start me on Prolia, to avoid further deterioration.... I'll check out your story, thank you.

[HeronNS in reply to Lisieux]

I have to say I had never heard of periarticular OP. Prolia is usually suggested because it is helpful for the spine. Personally I think it is a very dangerous drug, should not be used as first line treatment, and I would be asking about alternatives, but not knowing about your particular condition I won't go further with my opinion - it may be entirely wrong!

[Bet117 in reply to HeronNS]

Agreed!

[baxternoni in reply to HeronNS]

I have decided not to take any drugs for my osteoporosis even if some doctors want me to. I am already on too many drugs.

[baxternoni in reply to HeronNS]

Hi HeronNS,

Can you please tell me what brand of weighted vest you recommend. This is new to me. Thanks, NoniBaxter

[HeronNS in reply to baxternoni]

I bought a hypervest, because it has very small weights so you can increase slowly. Also it has a very adjustable fit. It may be more expensive than some, and certainly not "stylish" but I'm happy, and I'll never have to replace it, very durable.

hyperwear.zendesk.com/hc/en...

[baxternoni in reply to HeronNS]

Thanks, my PT just told me that this type is the best kind to buy because you can add weight slowly. She was not familiar with brands. I enjoy reading about all the knowledge you and fellow GCA members have. It has helped me tremendously. Thanks again

[Met00]

As Heron says, Prolia is supposed to be a last resort, not first choice of treatment, and is only recommended for those who have severe risk of fracture or for whom the more common treatment options aren't possible. If you do start prolia, you need to have a withdrawal plan, as you can't just stop it due to the risk of rebound fractures. Usually you'd be put straight onto a bisphosphonate if prolia is discontinued, but if you haven't tried a bisphoshonate first, how would you know that you could tolerate it? I've had a consultant say that prolia would be an option for me, but because I don't tolerate bisphoshonates I would have to be on prolia for life! At the moment I think it's only licensed for 10 years, so what happens when that time is up? And what if I had to stop taking it for other reasons at any point? Unlike some, I'm not totally anti prolia, but you need to know that you can tolerate bisphosphonates before starting it and, if you don't, have an alternative exit plan in place. In most cases, the usual approach to medication is to prescribe an oral bisphosphonate first and, if that causes digestive issues, move on to injections or an infusion, with prolia much further down the line. It seems to me that a growing number of consultants are too eager to prescribe prolia at the outset, which in most cases is unlikely to be justified.

Just out of interest, do you know your hip t-score? That's the one that's usually considered a better indicator of fracture risk. In addition, your specialist needs to do a fracture risk assessment, using a tool like FRAX, rather than basing your risk on t-scores alone. It's widely known that t-scores on their own aren't a reliable predictor of fracture risk, as bone density and bone strength aren't necessarily the same thing.

[HeronNS in reply to Met00]

I have personal reservations about FRAX as well. I had a tibial plateau fracture in 2014, which was counted as a "fragility" fracture. As a lifelong klutz I've since had more traumatic stresses to my bones and never broken anuything. The "fragility" fracture was caused by twisting my leg when I was stepping vigorously into what I thought was a pile of snow and it turned out to be cleverly concealed very hard ice. I think anyone would have either had a broken bone or had their ligaments ripped off. I was lucky it was the bone which gave, (and was not displaced). But of course, along with age and taking prednisone, it gave me a measureable FRAX score, 10% chance of fracture within whatever the time frame is. That is supposed to scare me into taking medication? I had, even before my efforts to improve bone density, 90% chance of NOT fracturing!

[Met00 in reply to HeronNS]

There isn't a perfect system, but FRAX does allow for other factors apart from just t-scores. Of course they need to be certain about what counts as a fragility fracture, otherwise it will give a false result. I had a similar experience. I broke my baby toe badly, but was assured on several occasions that it would never be counted as a fragility fracture. I was referred for a DEXA because an x-ray on the toe showed possible bone thinning. Then they decided maybe the broken toe should be considered a fragility fracture after all.. 🤔🤔

[HeronNS in reply to Met00]

I've since often wondered why, when I had the fracture, although I was treated very well and recovered quickly, no one mentioned maybe I was of an age (nearly 67) to get a DXA scan. I don't think I even knew such a thing existed.

[Fruitandnutcase in reply to HeronNS]

Same as you, I’ve had some absolutely spectacular falls too - including falling off my bike and I’ve never broken anything.

Then I had a really freak accident one night where I fell off my bed, it all happened in the dark so I haven’t a clue what happened but I think my arm must have windmilled through the air and hit the wooden floor with colossal force.

I know my numbers are in the osteoporosis range and I’ve got family history and other markers but even then I’m still not sure I would describe that fall as a fragility fracture.

[HeronNS in reply to Fruitandnutcase]

Most fractures are not osteoporotic. Most fractures are caused byaccidents and falls which could break the bones of anyone. I tripped over somthing last year, nearly exactly a year ago, and smashed my knee down as hard as it possibly could go on my floor. I ended up with a swollen knee and in a brace for a couple of weeks, with much longer to rehab, and yet I didn't break or even crack any bones. But then again we hear of people with compression fractures of the spine, or apparently spontaneous hip fractures, so we really do need to do what we can to keep ourselves strong enough to avoid those situations.

[Lisieux in reply to Met00]

Thanks for your reply.... I'm sorry it took me so long to answer, got quite tied up.... so my T-score for the left hip is -1.0 and right hip is -0.7 which is a normal score. I only have osteoporosis in the L-2-L4 region at -3.6. I don't know if this warrants the use of Prolia. My risk fracture is very low according to the test from this site. But it sounds like there are not too many options and my doctor continues to push the Prolia injection to avoid compression or fragility fractures.Thanks for reading this.

[Met00 in reply to Lisieux]

Some experts believe that such a huge discrepancy ("discordance") between hip and spine scores is extremely unlikely unless an error has been made in the measurement of one or both scores. At my last DEXA I had a hip score of -2.5, spine score of -3.6. 16 months later I had a REMS scan. This is new technology, which may not be available where you live, using ultrasound instead of x-ray and more reliable than DEXA because it's automated in such a way as to make operator and other errors far less likely. My scores from REMS were -2.6 for both hip and spine, showing that my apparent poor spine score, as measured by DEXA, was actually wrong. Apart from operator error (eg poor positioning on the scan table), other things like curvature of the spine and arthritis can skew the DEXA results. I would definitely ask for an explanation for the discordance in your scores.

[notanotter in reply to Lisieux]

I don’t know. Your numbers are so low / good in other areas. Why the difference??

Has the doctor explained how he made his recommendation? Maybe this type of drug does better if you have (or don’t have) high bone turnover markers? I know some drugs show more improvement in the spine compared to the hip.

Maybe seek a second opinion at a teaching hospital where they tend to keep up with new approaches?

But please be safe. I had a lumbar fracture as a teen from a car accident, and the pain took me out of my mind. It’s not something I would wish on anyone.

I’d want to know why my spine was so much worse off than other areas. I might even pay out of pocket to be scanned on a different machine to compare.