topic Re: Prolia in Wellness

Prolia

Witchy Woman — Mon, 27 Mar 2023 18:46:46 GMT

My endocrinologist is strongly suggesting I begin taking medication for my osteoporosis.

I've resisted, but the last appointment we discussed Prolia.

Because of complications getting the drug, I'm having second thoughts about all of this. I may wait and discuss with my GP in June.

Not only is the shot very expensive (insurance covers about 1/2 of it), but it requires preapproval and getting the shipment details worked out made me wonder if I was doing the right thing.

Tried Fosamax and had joint pain.

All of this so disappointing. I have exercised for most of my adult life...long distance running for many years, do some weight training...now walk at least 10,000 steps daily. I eat a very healthy diet, too...mostly fish, fruits and vegetables.

Any thoughts on the issue are appreciated.

Re: Prolia

FancyPhillyshopper — Mon, 27 Mar 2023 18:56:14 GMT

Dairy/calcium, Vitamin D. Protein rich foods. Oats, nuts.

I have a bowl of oat cereal with whole milk almost every day. Hiusband likes to eat a lot of cheese.

Some people also say peanut butter helps.

We always have nuts to eat.

Not sure you can reverse your issues, but perhaps this will help prevent it getting worse. I understand about pills and shots--sometimes they are just temporary solutions for a bigger issue.

Best wishes!

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 18:58:42 GMT

@FancyPhillyshopper

For now, I'm just putting any medication on hold.

Yes, I eat nuts, take Vit. D, Calcium, and many other things that compose a healthy diet.

That's what is so vexing! You do everything right and still have problems

Re: Prolia

granddi — Mon, 27 Mar 2023 19:12:40 GMT

i'm watching these comments and thank all for responses.

My question for docs concerning osteoporosis meds: Is this a drug that you would give your mother? My doctor comes back with "its the standard of care" The term standard of care is a legal term (care plan that will keep you out of court) rather than a medical plan.

I've read a lot about strontium added to calcium and D supplements. Used a lot in Europe but has its controversies.

Forteo: synthetic parathyroid hormone. Good luck here bc can cause bone cancer.

Vibration plates: first used by NASA to prevent bone loss by astronauts working in weightless conditions.

Re: Prolia

SilleeMee — Mon, 27 Mar 2023 19:12:52 GMT

I had osteoporosis twenty years ago and I got one dose of the yearly Zometa given by IV. Had a severe reaction, long story. Went through the whole nine yards with the vitamin d and calcium supps plus I started resistance exercising. Bone density scans came back better but not normal. Doctor did not want to prescribe anything b/c of my reaction to the Zometa.

Today I have a normal bone density scan. I'm 67. I discovered silica supplements years ago and I have mentioned them here dozens of times. They work for me. Others on this forum claim they have helped them, too.

Silica (aka silicon not to be confused with silicone) is the main building block of collagen in the body. Bones are almost all made of collagen. Here what the NIH says about silica supplementation:

SILICON AND BONE HEALTH

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2658806/

Re: Prolia

kaydee50 — Mon, 27 Mar 2023 19:21:40 GMT

I don't have osteoporosis--or at least I don't think so since I haven't had a bone density test in 4 years--but I would try what the previous poster suggested, silica. I would avoid drugs unless my life depended on it. IMO, if a drug is powerful enough to do one thing, it's also doing something else maybe not so beneficial.

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 19:22:58 GMT

@SilleeMee

Not sure if you remember, but we had a discussion some time back on the Silica supplements and I did buy them and HAVE taken them for a few months. Likely not long enough to show changes.

I just did a bone scan and it was -3 I think. So, I cannot have another for one or two years. That surely would be enough time to show changes if I am diligent.

I feel better having canceled any further action for now. So, I will be following up with my regular doctor on options and monitoring of the situation.

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 19:25:10 GMT

@kaydee50

I would agree.

My bad reaction to the Fosmax gave me pause for trying something else at this point.

Of course, the endocrinologist treating my thyroid made me feel this was importnat. I like her, but it still gave me pause knowing the side affects.

Re: Prolia

Icegoddess — Mon, 27 Mar 2023 19:38:19 GMT

I'm one of the ones that has had good results with the silica. I didn't have osteoporosis, but was diagnosed w/osteopenia. Have no idea what my number was, wonder if that would be in my patient portal, but that might've been before they had those, . Anyways, Dr. wanted me to do Prolia, but my insurance wouldn't cover any of it, so I said no. At the time, Fosamax was the only thing on my insurance company's formulary so I said I was open to that and he said okay. However, I never did use it and instead started taking the silica in the form of Bamboo Extract. I don't remember how long I took it, probably like 6 months or so. I know it was not long-term because there are warnings for people with thyroid disease not to take it long-term. My bone scan then came back good. I stopped taking it at that point because of the above-mentioned warnings.

I recently started taking the pure silica since my gynecologist mentinoned at my last appt. that it would be time soon for another scan. Silleemee and I discussed it and I decided to not take the Bamboo Extract and go with the pure silica. It's very easy to take. I just use 1/4 tsp mixed into my morning yogurt. That bag is going to last me forever.

Re: Prolia

Another new name Sue — Mon, 27 Mar 2023 19:39:37 GMT

I know it's discouraging to have such a diagnosis when you take good care of yourself. I'm sorry. Maybe it's genetic, and who knows where you would be if you didn't take good care of yourself?? Maybe worse.

I've been on several osteoporosis drugs, sorry to say, incuding Forteo the injectable. I didn't get bone cancer from it. Took Fosamax and had fractures on both femurs, a side-effect of that bone-building drug, believe it or not. I had surgery on both legs, and I'm good to go now! :-)

I've been on Prolia several years. Not sure if it's helping, because when I get my bone scan results, even if the density is down, I wonder if it would have been WORSE without the Prolia. Hope that makes sense.

One thing I do know is that when stopping Prolia, sometimes there is bone loss so to prevent this, bisphosphonates can be a suggested follow-up drug (Fosamax being one). I remember you didn't like that drug, Witchy Woman.

You might ask how long a person can be on Prolia and the side effects.

Obviously, I don't know how old you are. Maybe if you are in your late 60's or above, it would be more appropriate for you. If younger, you might want to look at something else if there is anything other than bisphosphonates. This is just my 2 cents, my opinion, and maybe not a good one. You could get a second opinion and advice from another endo? Good idea to talk with your GP. You are smart to look into this instead of just jumping.

Re: Prolia

granddi — Mon, 27 Mar 2023 19:44:18 GMT

Don't you all think that our docs are obligated to recommend and chart these recommendations. What I would like is a frank discussion of the pros and cons. I understand having to CYA. I wish more docs would say here are some treatment options that may or may not work for you (nutrition, supplements, lifestyle, exercise)

I was first diagnosed with osteopenia at about age 62ish? I was Rxed Fosamax but d/c after about 6 months. I consulted a private pay endocrinologist. I began bioidentical hormones (like for menopause). After 2 years my bone density had improved. I told by primary doc that I had not been taking Fosamax she didn't even let me finish. She literally threw up her hands and said Whatever! and left the room.

Since then I have faithfully New Chapter bone supplements, weight bearing exercises. One hip is now nearing osteoporosis.

@Witchy Woman Like you, I feel like I have done all the right things. I have added Silicon @SilleeMee

I am dealing with my blood level of D being 2X normal. Primary care says: just stop your supplements.

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 19:51:56 GMT

@granddi

How frustrating is all of this? Makes you want to scream.

By way of information, I took bioidentical hormones for MANY years. This was back when they were made at a compounding pharmacy and later, I wore a patch.

I started menopause at 50 and the hormones really made a huge difference. Fast forward a few years and I had a complete hysterectomy that removed a cancerous tumor so they went back and took the lymph nodes.

Dr. told me to discontinue all hormones at that point because of increased cancer risk. I think that was the beginning of the end for me.

I'm honestly wondering if the lack of hormones does more harm than taking them. If I could find a decent doctor that would prescribe them, I might reconsider taking.

However, at 72, I'm sure they would go into orbit if I made such a request.

Re: Prolia

Another new name Sue — Mon, 27 Mar 2023 19:55:06 GMT

One other thought...

For me, Medicare and my secondary completely cover the shot. If you are close to Medicare age, you might check into the coverage you will have and if it's not too long, wait until then if the coverage is good. Maybe you are young and a long way to Medicare.

Re: Prolia

Catch71 — Mon, 27 Mar 2023 19:56:29 GMT

@granddi

I had to reply because that is the question I asked my doctor and she said yes, my Mother is on it. I have had 9 treatments of Prolia, one more to go! I have had no side effects. My osteoporosis went to osteopenia so it didn't help that much, however, it did not get worse.

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 20:02:54 GMT

@Icegoddess

After a month of Fosamx, I could hardly move. Stopped taking it and complained that my joints hurt too bad. Dr. just looked at me like I wasn't there.

I'm taking the pure silica and taking medication for thyroid.

Not sure what I'll end up doing, but I know I am discouraged at this moment.

Re: Prolia

NickNack — Mon, 27 Mar 2023 20:03:15 GMT

I believe this is my sixth year on Prolia. I tried Foxamax first and had horrible joint pain. I haven't had any side effects with Prolia.

It did reverse my osteoporosis, and I'm glad I'm taking it.

Re: Prolia

Icegoddess — Mon, 27 Mar 2023 20:06:43 GMT

@Witchy Woman wrote:
@Icegoddess

After a month of Fosamx, I could hardly move. Stopped taking it and complained that my joints hurt too bad. Dr. just looked at me like I wasn't there.

I'm taking the pure silica and taking medication for thyroid.

Not sure what I'll end up doing, but I know I am discouraged at this moment.

@Witchy Woman to be clear, there shouldn't be any problems with taking the pure silica even with thyroid problems. That's why I switched to it. Good luck!

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 20:07:28 GMT

@Another new name Sue

I'm 72 and will be 73 in October....so not young

After a lifetime of taking care of myself, this is the thanks I get!

Just putting it all on hold for now makes me feel better. I was getting so stressed out from everything.

The injections run $1500 + and my insurance was going to cover about half. And, while I could afford it, I just found myself feeling aggravated at the whole system.

Sounds like you've had more than your share of issues, so I admire your perseverance.

Re: Prolia

Witchy Woman — Mon, 27 Mar 2023 20:08:51 GMT

@Another new name Sue

Don't have Medicare D, but I do have very good health insurance from my years as a Federal employee.

However, even that only covers 1/2 so my cost was $750 per shot!

Re: Prolia

hckynutjohn — Mon, 27 Mar 2023 20:36:23 GMT

@Witchy Woman wrote:
@FancyPhillyshopper

For now, I'm just putting any medication on hold.

Yes, I eat nuts, take Vit. D, Calcium, and many other things that compose a healthy diet.

That's what is so vexing! You do everything right and still have problems

@Witchy Woman

While my problem is different, I could say pretty much the same things you have said in your posts. That is in regards to how you have lived much of your life:
"doing everything right and still have problems".

Part of the reasons I chose to change my lifestyle was similar to yours. I wanted to lessen the chances of being unable to live my type of life. Doing so, had my body able to live through those specific health issues, I probably would not have otherwise.

I was well aware of what the health issues were for almost everyone on my maternal side of my family. Knowing this had me living the lifestyle I chose to help lessen the chances of me suffering from those same issues.

For me it was pretty much all my genetic predispositions to Cardiovascular Disease. I was much older before it became part of my life, and my lifestyle allowed me to live through them, and still be able to live my type of life, for several more decades.

I didn't/don't find it to be "vexing". Kind of disappointing, but not surprisingly so.

Hopefully you find something that will help you with whatever issues you are going through. My best to you,

hckynut 🇺🇸