Undecided choice of drugs for Osteoporosis

Posted by peace44 @peace44, Oct 10, 2023

I am 80 years old women and have borderline osteoporosis which affects my entire body. My doctor wants me to take Prolia and the Rheumatologist wants me to take Reclast. I’m unhappy with both choices as the side effects are great and I do not tolerate new drugs well. I am very undecided and am considering doing not taking annty drugs for this condition. I have never had a fracture and I’m very active Any opinions or advice.

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@mayblin

@normahorn did you come across calcium and phosphorus ratio or balance? It's surprising that dairy and high calcium containing bone-in fish like sardines have such a high amount of phosphorus. Maybe that's what's "wrong" about dairy... In the end, op patients are just having too much metabolic inadequacies in this complex bone matrix

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In a quick search, I did not find any info from what I would consider reliable sources such as NIH.

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@gently

The endocrinologist I see would advise against medication for borderline osteoporosis. I, on the other hand (with no particular knowlege of anything) would be alarmed at the suggestion of Prolia. And would advise against reclast. But would suggest you look at Forteo.
It is just that if you fracture your life will change in ways you can't imagine. I've read that more fractures occur in osteopenic women than in osteoporotic women.
Trabecular bone structure is poorly depicted on dxa. Have you had a TBS. That is where we lose bone the fastest because there is more surface area to this type of bone.
Some people never fracture. I'm not taking the risk and have been on Forteo since April without negative effect.
70% of women 80 or older have osteoporosis. Congratualtions.

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Gently, what is a TBS? TY

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@ahmeyers

Forgot to ask- any recommendations on calcium/d/magnesium supplements? Every time I settle on one I find criticism on the ratios, amounts etc. I just purchased New Chapter Bone strength (which is criticized for ratios of Magnesium to Calcium). I am also am strongly considering Algae Cal (which my doctor did not approve of but I think she may be misinformed). That too doesn't have the 2:1 calcium magnesium ratio that seems to be the recommended ratio. If a company that does nothing but manufacture bone supplements doesn't use that ratio, surely there's a rationale. I think I should dive into McCormick's book before asking any more questions. I have a feeling I will get a lot of them answered.

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Just for information. I contacted Algae Cal and they replied with a very positive prospective. If you take their started kit they will reimburse you on your next DEXA score scan if you show no improvement. They guarantee positive and improved results. Calciven is another supplement that contains all the needed supplements into one pill. I’m still undecided on which drug but I did start Marine Collagen Peptides in capsule form. I’m 80 and don’t wish to put any foreign drugs into my system since as we all know may or may it have side effects.

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@windyshores

I just read a study on the difference between taking a bone builder before Prolia and bisphosphonates or after. The difference was shocking: in some cases the latter had half the effectiveness. It is much much better to take Eventity, Tymlos or Forteo before a bisphosphonate or Prolia!

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Can you share the study you read? Thank you!

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@ahmeyers

Hi,
I'm new to the board. I was just diagnosed with osteoporosis (left femoral neck -3.5, L1-L4: -3.0). I'm only 54yo, no symptoms, and very strong and healthy (weight lifting regularly for the past year and a half). I'm stronger than I have ever been in my life. I haven't broken a bone since I was 13. I actually asked my primary to order the Bone DEXA on a whim, fully expecting her to come back and tell me I had the bones of a 20 yo. I was devastated to see the results. I had an appt with a rheumatologist yesterday and her recommendation was Reclast infusion. (She wanted to start me on an oral medication but when she learned that I had a hx of ulcerative colitis (many years in remission) she was excited to tell me that insurance would approve skipping the pills and going straight to the Reclast. This is all brand new to me. I have always leaned towards Naturopathic approaches. Even with the UC, I chose to forego all traditional treatments and managed to stay symptoms free for 8 years now. Her advice was that my T-scores were too low to "play around with natural treatments". I asked her abut the AlgaeCal program and she said the Strontium element in it was ill-advised and gave misleading DEXA improvements. Reading these posts, it seems traditional medicines may be my best option. However, the general consensus seems to be that Forteo would be the place to start rather than Reclast. There's a part of me that wishes I never got the DEXA scan and could go forward feeling strong and healthy. Instead, I feel like I stumbled into a world of contradicting evidence, side effects, risks and confusion. Any input or advice is so welcome.

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Amy, I also live in South Florida, it is hard to find a MD who will truly listen to concerns regarding OP. I would encourage you to get a second opinion from an Endocrinologist. Reclast is a very strong medication and there are other medications that you might want to consider first, Take your time and do your research. The books that others on this site have recommended are excellent ( I wish I had them when I was first diagnosed 12 years ago). We are all here on this site to support each other and knowledge is power. At this time just be mindful of the exercises you are doing and keep safety in mind.
Lisa

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@tilou

Gently, what is a TBS? TY

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tilou, trabecular bone score measures fracture risk in the lacy bone that is surrounded by the less flexible cortical bone. It is calculated by new(er) software using the same 2d images that dxa creates. https://onewelbeck.com/news/trabecular-bone-scoring/#:~:text=Trabecular%20Bone%20Score%20is%20a,is)%20which%20has%20several%20applications.
You may already know that because trabecular bone has more surface area it is more vulnerable to density loss. Vertebra have the most of this type of bone. Alignment of the spicules remodels for strength by aligning according to the pressures placed on it by our activities.
Fracture of this type of bone can be devastating because healing doesn't restore height lost
with vertebral compression.
Determining the strength of this bone with a trabecular bone score may prove to identify the risk of fracture in more individuals . https://study.com/academy/lesson/trabeculae-of-bone-definition-function.html#:~:text=Trabeculae%20are%20the%20thin%20columns,ribs%2C%20skull%2C%20and%20vertebrae.

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@ahmeyers I chose Tymlos because the dose pen is adjustable so I could ramp up slowly. I never took the full dose (I am small) and still had excellent gains. It is otherwise very similar to Forteo.

The other reason was that I was told I could do Evenity after Tymlos but not the other way around. I will do a 20% test dose of Reclast to "lock in" gains after the other meds.

Osteoporosis does not have symptoms. We feel strong. I was doing sword tai chi for several months. I still fractured three lumbar vertebrae with one wrong movement. My Tymlos was delayed by COVID unfortunately. You do not want to be me, and have the pain and disability from fractures. Side effects of meds, if they happen, are, in my view, worth it. But the lack of symptoms from osteoporosis makes it hard to be motivated!

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@ahmeyers

Hi,
I'm new to the board. I was just diagnosed with osteoporosis (left femoral neck -3.5, L1-L4: -3.0). I'm only 54yo, no symptoms, and very strong and healthy (weight lifting regularly for the past year and a half). I'm stronger than I have ever been in my life. I haven't broken a bone since I was 13. I actually asked my primary to order the Bone DEXA on a whim, fully expecting her to come back and tell me I had the bones of a 20 yo. I was devastated to see the results. I had an appt with a rheumatologist yesterday and her recommendation was Reclast infusion. (She wanted to start me on an oral medication but when she learned that I had a hx of ulcerative colitis (many years in remission) she was excited to tell me that insurance would approve skipping the pills and going straight to the Reclast. This is all brand new to me. I have always leaned towards Naturopathic approaches. Even with the UC, I chose to forego all traditional treatments and managed to stay symptoms free for 8 years now. Her advice was that my T-scores were too low to "play around with natural treatments". I asked her abut the AlgaeCal program and she said the Strontium element in it was ill-advised and gave misleading DEXA improvements. Reading these posts, it seems traditional medicines may be my best option. However, the general consensus seems to be that Forteo would be the place to start rather than Reclast. There's a part of me that wishes I never got the DEXA scan and could go forward feeling strong and healthy. Instead, I feel like I stumbled into a world of contradicting evidence, side effects, risks and confusion. Any input or advice is so welcome.

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ahmeyers,
sorry for your news, and welcome.
I agree with your rheumatologist that you are at risk of fracture. Reclast would not be my choice. An anabolic drug will give you more protection from fracture faster.
Many osteoporosis patients are sveldt with high activity levels. Our muscles are stronger than our bones and allow us activities that bones won't tolerate.
Additionally, we don't like to take medications and it sometimes takes a fracture to convince us
At 54 your protective estrogen levels are dwindling. You are on the cusp of a dangerous time for your bones.
Reclast is a bisphosphonate. Bisphosphonates work by preventing the bone from renewing itself. You body will retain the older bone and that bone ( with all its cracks and fissures) will eventually add up to greater density. The mechansim is called antiresorptive.
There are several drugs that are called anabolic because they build bone. Forteo, Tymlos and Evenity. A lot to consider.
Best wishes

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@ahmeyers

wilkenl and Chris,
Thank you both so much for your replies. I really want to figure this out . Before I knew anything about my bone health, I started lifting because I got a late start with kids (I have 15yo twin girls) and I figured if I want to be an active grandma, I better get off my keister and start building muscle. wilkenl, I just got that book in the mail today! I ordered that and
Lies My Doctor Told Me: Osteoporosis: How the Latest Medical Research on Bone Drugs and Calcium Could Save Your Bones, Your Heart, and Your Life. Either of you familiar with that one?
I would love to find a good naturopath. Unfortunately, S. Florida is a bit of a wasteland for alternative medicine. I wonder if telehealth is an option. The west coast seems to be housing some of the best docs. Also, when you say "its too late for me" to manage naturally, is that based on your DEXA score? At -3.0 and -3.5, my rheumatologist felt that it was too late for me to explore that route. I'm not sure yet.
Chris, Thank you for all the advice. I'm curious what made you choose the Tymlos? If I am indeed going to start one of the bone building meds, my biggest concern is hair loss. I know strong bones are more important than a head of hair but I spent five years growing it in after losing much of it as a combined result of an overzealous hormone doc and his testosterone pellets combined with the stress of a uc flare.
Thank you again- its nice not to navigate this alone. I love smart women. There's nothing we can't do 🙂
Amy

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Hi,
Were you taking BHRT therapy through biote ? I started this treatment last month hoping that it would help with having very little hormones in my body and another way of building my bones up. I am also taking Evenity for -4.6 in my spine and -2.1 in hip that’s not bad .

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@windyshores

@ahmeyers I chose Tymlos because the dose pen is adjustable so I could ramp up slowly. I never took the full dose (I am small) and still had excellent gains. It is otherwise very similar to Forteo.

The other reason was that I was told I could do Evenity after Tymlos but not the other way around. I will do a 20% test dose of Reclast to "lock in" gains after the other meds.

Osteoporosis does not have symptoms. We feel strong. I was doing sword tai chi for several months. I still fractured three lumbar vertebrae with one wrong movement. My Tymlos was delayed by COVID unfortunately. You do not want to be me, and have the pain and disability from fractures. Side effects of meds, if they happen, are, in my view, worth it. But the lack of symptoms from osteoporosis makes it hard to be motivated!

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Did Dr explain why you can't take tylmos after evenity? I've seen a few ppl on fb groups that have. I was hoping to use that after my final injection next April. Thanks

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