topic Re: Prolia? in Wellness

Prolia?

Jaynah — Sun, 24 Mar 2019 20:42:39 GMT

Ladies who are on Prolia, what has been your experience?

Ladies who have been on Prolia for a while and had a subsequent

Dexa, has there been improvement in your bone mass?

Ladies who have been on Prolia for four years, then had to go off,

have you had rebound effects with fractures?

Have you had any side effects such as achness in muscles and joints, etc. after an infusion?

Thank you SO much, if you can help me.

My endochronologist wants me to go on Prolia, and I would really

like to talk to women who are on it.

Re: Prolia?

KingstonsMom — Sun, 24 Mar 2019 21:23:06 GMT

@Jaynah

I did Prolia for 3 years and my Dex scan had greatly improved!

My Endo had me take a year off and I recently started back using it.

I had no side effects at all using Prolia nor during my taking a year off.

If you are Medicare eligible, there are grants to help you afford Prolia.

This is from a previous thread I did on this subject:

Grants Help With Rx/Medical Costs

‎02-07-2019 10:06 AM - edited ‎02-28-2019 03:53 PM

I use Prolia for osteoporosis.

I have Medicare Part A & B, no D, I use our secondary private insurance from DH's job (now retired) for my drug coverage.

I recently ordered Prolia and found that my co-pay had increased from $95 to $145, ouch!

When checking with the drug manufacturer for their assistance program for Prolia, I did not qualify because of Medicare part B.

I was given a name & # for grant assistance and contacted them to inquire. They do have a website, but there were so many links for the different programs, I decided to just call.

I was approved for a grant for $1,000 a year (for 1/7/19-1/6/20) after which time I have to re-apply for next year.

The grant I was given was through the Post Menopausal Osteoporosis Fund, but as I said they have a ton of funds, some even helping with medical co-pays.

The only requirement they had was that our annual income had to be $67,640 or less for our family of 2.

It was all done by phone and I was approved in maybe 15 minutes, although they will verify our income.

I was thrilled, as my $145 co-pay will be paid 100%!

I was also given the name & # for another assistance program, but didn't need to call them, since I was approved through the first.

Thought I would share, in case any of these funds can help others!

Healthwell Foundation.org

1-800-675-846 (M-F 9-5)

The other that I did not need to call:

PAN Foundation.org

1-866-316-7263

https://community.qvc.com/t5/Wellness/Grants-Help-With-Rx-Medical-Costs/m-p/5246826#

Re: Prolia?

NickNack — Sun, 24 Mar 2019 21:24:46 GMT

@Jaynah

I've been on it for about two years with no side effects at all. Before Prolia I tried Fosamax. I had such horrible aches that I had to quit taking it. I have had a DexaScan since starting Prolia, and did have improvement in my bone mass.

Re: Prolia?

KingstonsMom — Sun, 24 Mar 2019 21:26:16 GMT

Just in case you are not Medicare eligible, the manufacturer offers co-pay assistance.

Re: Prolia?

Carmie — Sun, 24 Mar 2019 22:19:47 GMT

I am not on it but, my sister is. This is her second year. Her latest Dexa scan showed no progression of her osteoporosis.

Her osteoporosis is very severe. She has taken prednisone for at least 40 years. Her bones look like honey combs...really hollow. She has no had any side effects. She hasn't broken a bone in about two years.

She used to get stress fractures in her legs afew times a year that caused her great pain.

Personally, If I needed it, I would not hesitate to take it.

I forgot to mention that she gets some kind of grant assistance. Her Medicare Advantage Plan denied it. The doctor's office took care of getting her financial help.

Re: Prolia?

Jaynah — Sun, 24 Mar 2019 21:43:57 GMT

@KingstonsMom thank you for letting me know how Prolia worked out for you.

Insurance is no issue for me. :-)

Re: Prolia?

Jaynah — Sun, 24 Mar 2019 21:47:45 GMT

@Nicknack, thanks for your response. Did the doctor give you a percentage

of increase in your bone mass after you had been on Prolia? I am interested

in knowing the improvement in bone mass.

Re: Prolia?

Jaynah — Sun, 24 Mar 2019 21:48:43 GMT

@Carmie thank you for letting me know your sister's experience!

Re: Prolia?

NickNack — Sun, 24 Mar 2019 21:51:30 GMT

@Jaynah wrote:
@Nicknack, thanks for your response. Did the doctor give you a percentage
of increase in your bone mass after you had been on Prolia? I am interested
in knowing the improvement in bone mass.

@Jaynah It's possible that she told me, but I don't remember. I was very glad that it had improved though. I'm due for another DexaScan soon. I have my annual exam scheduled in May, and I'm sure she'll schedule the DexaScan then.

Re: Prolia?

Jaynah — Sun, 24 Mar 2019 22:02:20 GMT

@Nicknack thanks for answering. Good luck with your next Dexa, it will be

interesting to see if there is more bone mass improvement! :-)

My main concern right now is going off of Prolia after four years. (doctor recommended) I have read about rebound fractures after you go off of Prolia.

I'm going to ask doctor if resistance weights is an option instead of taking a drug. Sadly, doctors never mention exercise or diet. :-(

Re: Prolia?

SilleeMee — Sun, 24 Mar 2019 22:49:59 GMT

I'm 63 and several years ago, about 15 years or so, I had a BD score of below -2.5. I was given one dose of yearly Rx Zometa and my score came up to a low score...osteopenia. I had a severe and adverse rare reaction to the Zometa so it was not prescribed any more.

I have since been consistently doing resistance exercise with stretch bands, taking more calcium and vit D. I also discovered silica (silicon) supplements and that has made my BD score normal. The silica is a bamboo silica extract powder that I take everyday...a heaping 1/4 teaspoon. Don't confuse silicon with silicone...they are not the same thing.

Here is any interesting publication from the NIH regarding silica supplementation and bone density:

"SILICON AND BONE HEALTH"

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

Re: Prolia?

Jaynah — Sun, 24 Mar 2019 23:56:24 GMT

SilleeMee, I am so grateful you shared your story and gave me the silica information

and link. I will be discussing this with my endocrinologist tomorrow morning at my scheduled appointment. Thank you so much!

Re: Prolia?

vsm — Mon, 25 Mar 2019 00:46:43 GMT

I was on it for 2 years, and DEXA showed what my doc described as "significant improvement" in bone mass. I've now been on it 2 more years -- haven't been told to stop taking it. I had no side effects that I'm aware of. To me, it's a godsend.

Re: Prolia?

BirkiLady — Mon, 25 Mar 2019 01:27:38 GMT

@Jaynah My Rheumatologist had scheduled a regular DEXA for me in February. However, in December a woman ran a stop sign and my back was fractured in three places. I haven't been able to reschedule my DEXA until late this week. We've already talked about going on Prolia for both my fractured back and Lupus.

Additionally, I've talked with my Ortho. Surgeon about Prolia. He says, "It's the best miracle drug in decades." As does my PCP. All three physicians feel it's safe and best for me.

I was on a monthly tablet for six or seven years, but stopped it two years ago. Haven't noticed any change in my bones. They are still strong after taking that first line of defense. If I hadn't been in an accident, I'm confident my bones would still be fine. However, at 71, I'm comfortable with the pro-active approach. I enjoy swimming, tennis, golf, walking and gardening in my flower beds. Hope to return to tennis, golf and gardening as soon as the weather improves and I'm out of this back brace!

There is additional information on the internet. Best wishes on improved health!

Re: Prolia?

Jaynah — Mon, 25 Mar 2019 02:45:07 GMT

@BirkiLady - I've researched on the Internet for months, have tons of hand outs from the doctors who get them from the drug manufacturers; have gone to two endocrinologists.

I would rather have first hand information of ladies on Prolia, not what the drug companies and doctors tell you! :-)

Re: Prolia?

BirkiLady — Mon, 25 Mar 2019 04:30:11 GMT

@Jaynah I would have gone on Prolia in February had I not had a broken back. My DEXA was scheduled and I had been off any medication for two years. I'm that confident of Prolia. The accident happened to give me a chance to ask other specialists about it. It has been my experience that a really good physician isn't going to push a medication if it is not necessary. I have complete faith in my physicians. If I don't, I've been known to walk out of their offices.

ETA: I'll respond after receiving my first injection. I receive it the same day as my DEXA.

Re: Prolia?

Susan Louise — Mon, 25 Mar 2019 04:45:50 GMT

@Jaynah I highly recommend watching a video below...just Google:

How to reverse/prevent osteoporosis? Ken D Berry MD

Re: Prolia?

quadmimi — Mon, 25 Mar 2019 11:46:16 GMT

@SilleeMee wrote:
I'm 63 and several years ago, about 15 years or so, I had a BD score of below -2.5. I was given one dose of yearly Rx Zometa and my score came up to a low score...osteopenia. I had a severe and adverse rare reaction to the Zometa so it was not prescribed any more.

I have since been consistently doing resistance exercise with stretch bands, taking more calcium and vit D. I also discovered silica (silicon) supplements and that has made my BD score normal. The silica is a bamboo silica extract powder that I take everyday...a heaping 1/4 teaspoon. Don't confuse silicon with silicone...they are not the same thing.

Here is any interesting publication from the NIH regarding silica supplementation and bone density:

"SILICON AND BONE HEALTH"

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

@SilleeMeeThanks for the info...do you have a certain silica you take? (brand)

Re: Prolia?

SilleeMee — Mon, 25 Mar 2019 12:10:06 GMT

@quadmimi wrote:
@SilleeMee wrote:
I'm 63 and several years ago, about 15 years or so, I had a BD score of below -2.5. I was given one dose of yearly Rx Zometa and my score came up to a low score...osteopenia. I had a severe and adverse rare reaction to the Zometa so it was not prescribed any more.

I have since been consistently doing resistance exercise with stretch bands, taking more calcium and vit D. I also discovered silica (silicon) supplements and that has made my BD score normal. The silica is a bamboo silica extract powder that I take everyday...a heaping 1/4 teaspoon. Don't confuse silicon with silicone...they are not the same thing.

Here is any interesting publication from the NIH regarding silica supplementation and bone density:

"SILICON AND BONE HEALTH"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2658806/
@SilleeMeeThanks for the info...do you have a certain silica you take? (brand)

@quadmimi

You're welcome. I buy Bulksupplements Bamboo Extract Powder from Amazon. Item number is B01LWBFI3H (type that number in the search box).

The bamboo extract is a tasteless lightweight white, fluffy powder. It dissolves easily in any liquid and has a very slight grittiness to it but not uncomfortable to swallow. As a plus for me, this supplement has made my hair and nails grow faster and stronger. That was the original reason why I started taking it...the bone health part was discovered later.

Re: Prolia?

PilatesLover — Mon, 25 Mar 2019 13:44:49 GMT

@SilleeMee wrote:
I'm 63 and several years ago, about 15 years or so, I had a BD score of below -2.5. I was given one dose of yearly Rx Zometa and my score came up to a low score...osteopenia. I had a severe and adverse rare reaction to the Zometa so it was not prescribed any more.

I have since been consistently doing resistance exercise with stretch bands, taking more calcium and vit D. I also discovered silica (silicon) supplements and that has made my BD score normal. The silica is a bamboo silica extract powder that I take everyday...a heaping 1/4 teaspoon. Don't confuse silicon with silicone...they are not the same thing.

Here is any interesting publication from the NIH regarding silica supplementation and bone density:

"SILICON AND BONE HEALTH"

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

@SilleeMee which brand of the silica are you using? Thank you.