Hello @bonnieh218,

I appreciate your sharing information about reporting side-effects of the Prolia treatment. It is a small thing, but if everyone did so, it might make a difference.

Do you mind sharing what med you were taking that caused the side-effects that were not listed in the literature?

Hopeful33250 I was taking Omeprazole and my doctor said that the side effects I was having couldn’t be from the Omeprazole because the things I was experiencing were not listed as side effects in the Omeprazole literature.

Yes, my PTH WAS ELEVATED prior to my first injection and D was very low, calcium was normal….I assumed my parathyroid was producing more in compensation…Yes, prescription strength D3…Also at that time my GFR WAS 83.5….Six months later calcium still normal, PTH STILL HIGH and GFR dropped 12 points…I am concerned about my kidney function….Every other lab is nprmal…I think prolia may be the culprit for the decrease in GFR….As for the parathyroid I am stumped…Rheumatologist plans on checking PTH AND GFR IN A FEW WEEKS. IF my results are not favorable, I may not continue with Prolia…As for the elevated PTH, TUMOR??I think more tests are needed..The b vitamin D deficiency has been ongoing…When you live in the armpit of PA where the sun doesn't shine, lol..

I understand, @trinity. I live in Michigan, also a place with little sun! I find it interesting that you also have a high PTH but normal calcium level, much like me. Have you had the nuclear scan of the Parathyroid to look for adenomas? I recently had it and it appeared normal.

If you don't mind sharing more, how low is/was your D level? Mine was at 17 for a long time. When I increased the supplements to 4,000 (take in two doses, morning and night) it finally got up to 30. My endocrinologist said that taking two separate doses was probably better than taking it all in one dose.

I appreciate your sharing your journey with this problem!

Thanks for the additional information, @bonnieh218. Omeprazole can also cause bone loss, but you are probably familiar with that?

Prior to my first Prolia injection my D was 9….This has been an ongoing problem for me….I take the prescribed megadoses followed by maintenance recommendations…..I had a surgical menopause at age 29…. My osteoporosis is severe. My rheumatologist plans to recheck my PTH and GFR in a few weeks….He says not to worry…I was the one who had to bring his attention to the significant decrease in the glomerular filtration rate…I have not been to an endocrinologist yet, but pending my recheck, I will request a referral….I have no idea how long my PTH has been elevated; I know only for the last year and a half by virtue of testing…..NOTHING in my lifestyle has changed…I take an ACE INHIBITOR, plus my maintenance dose ov D3 and calcium petites.. I FEEL IT IS PROLIA….I will not sacrifice my kidneys….I am ambulatory and will continue to walk daily as always…I will post more when I have more facts…We all must remain healthy and informed…

@trinity. The information in your post is far beyond my knowledge but I plan to research this to learn more and understand better. I just know that my DEXA numbers were in the osteoporosis range and my doctors – PCP and endocrinologist – both advise me to go on a medication. Both of them seem to favor Reclast.
JK

Thank you for your post, I am not familiar at all with PTH and GER. I am on Generic Fosamax year 2 and like you I had a surgical menopause a bit older than you. I checked with two Orthopods and my GP before starting my " bone med" – plan on a bone scan after the Corona virus settles down for getting tests. Thanks again.

PS I take Vitamin D also.

Hi trinity. I also live in the armpit of Pa. I wonder if it is the same armpit. I started on Prolia and am due for my 4th shot this Thursday. I got the results from my blood work and was shocked with the GFR number. It does make me wonder if it's worth it. I've been relatively healthy my whole life and I don't want to "kill" my kidneys. Actonel didn't help and I was on that for 10 years. I'm really considering stopping the shot to save my kidneys. Although what alternatives work to improve the bones? Have you found out any more options?

Hi Peggy! I live in the village of Wilcox, PA..It is considered NW PA. As you have reviewed my postings, 1 PROLIA INJECTION AND MY GFR PLUMMETED 12 POINTS…My second one was on 3/25….If labs were done prior to the injection and I reviewed them, I would have definitely opted out! !!! I am supposed to have both PTH AND GFR repeated…I still waiting for the order from my rheumatologist. ..I thought midway about 3 months to check the values….I AM DONE WITH PROLIA…I am 67 years old and a retired Director of Nursing…I have also contacted the FDA RELATED TO THIS…PLEASE CHECK YOUR GFR VALUES DURING YOUR COURSE OF PROLIA TREATMENT…IF IT HAS BEEN A CONTINUOUS DECLINE YOU INDEED HAVE SOMETHING TO REPORT….SOUNDS like you are otherwise healthy…Please keep me apprised of progress…Oh, first I started with BONIVA for about 10 years; my stomach was horrible…I had such GI DISTRESS…NEXT was RECLAST…I had a total of 3 infusions…Insurance dictated no further payment or recommendation…Then last year I decided to see a rheumatologist again…Hence PROLIA…My DEXA SCAN IS DONE EVERY OTHER YEAR PER MEDICARE…IN MY age bracket, the bone changes are slower in degeneration now..I WILL continue to walk daily and be active…U have always walked 5 miles daily…I will post after my labs; however, none of us are thrilled to enter the hospital setting for labs due to the COVID 19…I have seen other declines in GFR ON THIS MAYO CLINIC SITE…We as a group need to report negative findings to both the FDA AND PROLIA FOR THEIR ADVERSE REACTIONS. ..KEEP IN TOUCH AND THANK YOU SO MUCH PEGGY…

Hi Trinity. My armpit is NEPA just outside of Harvey's Lake. I am also 67 but not retired yet (although this shut down could put the small dental lab, where I do crown and bridge, out). I started out with fossamax when I was 50. Developed some bone or muscle pain after a few months so was switched to actonel. Took that for 10 years and they then said "Oh, you shouldn't be on it so
long". So it was stopped. Two years ago I was advised to continue some kind of treatment so after consulting a rheumatologist prolia was chosen. I have had four rounds of tests. On 8-3-18 bun was 26, creatinine was 0.9, and gfr was >60. On 3-18-19 bun was 21, creatinine 1.0, gfr was >60. On 10-23-19 bun was 20, creatinine was 1.0, and gfr was 58.7. This time 5-15-20 the bun was 21, the creatinine was 1.2 and the gfr was 47.7! Wow! That was hard to get right with stupid auto-correct! So now they have called me to advise me to see my pcp. The bun number was the red flag but not the gfr???? Are you kidding me? That gfr number puts me in a stage three kidney disease catagory. I take calcium and D everyday. Exercise 45 minutes every other day. Eat a reasonably healthy diet and drink an average amount of liquids. Have no symptoms of kidney issues ,yet. Urine is clear to light yellow. I know they give you all the bad possibilities of stopping prolia but do they outweigh the probability of destroying kidneys? Can kidney function be improved? I'd really like to keep my kidneys in good shape. What are other options for the bones? Is an alkaline diet very useful? I understand it would be quite hard to follow. Thank you so much for responding to my message so quickly. I joked to my husband that I have a "bone buddy". Oh, and I did not capitalize the drugs because I did not think they were entitled to the respect. With the numbers I have what would you do? I'd like to think there are other options but other than diet I'm not sure.